May 28, 29,30 &31, 2010

WOW I'm cramping alot of days into one post :-)

Long holiday weekend and all.

May 28,2010

They cleaned her classroom so Sweet Pea went to school on Friday. I picked her up after school and she was in a sort of panicky mood.. We were dropping the boys off at grandma's house right after school because Sweet Pea had a softball game Friday night (the start of a weekend tournament) and we had to be an hour and a half away by 5:30pm so we were a little rushed.. ONLY Sweet Pea had forgot something not at all important at school and was all panicky about it.. In her normal state of mind I would have been able to make her see she could just get it on Tuesday but I could tell she wasn't in that normal state of mind.. So to keep it from getting into a full blow attack of sorts I thought I would just put her mind at ease and we went back to the school.. I don't know if this is the right thing to do or not.. but I didn't want her getting herself so worked up and worrying for the whole 4 day weekend about this.. I wanted to stop that panic attack OCD sort of stuff as soon as I could and get her mind on other things and off of what she left at school so that is what I did.

We had a little more crying before her softball game, about the fact that I washed her ball socks after she wore them last week...Last week she had no issues at all with the ball socks being tight, Friday night she was crying and tugging on them and saying they were too tight same thing with her spikes(which are a size 2 and she is only in a size 13 or 13 1/2) we bought the spikes before we knew about PANDAS just knew that everything hurt her and felt to tight so we bought them big where she was happy about them.

Anyways Friday at the ball field she started to crying putting them on.. I looked at her and said, if you want to play you have to put them on, if they are hurting you that bad you don't have to play ball today.. she put them on

And I knew that her brain must have antibodies attacking it because we haven't had ANY clothing sensory sort of issues since she started the antibiotics.. So I gave her Motrin and she went to play ball...

1/2 way though the game.. She was back to normal.. happy, smiling, laughing..

AND wanted to spend the night at the coaches house with the coaches daughter that night..

I was scared to let her go.. not that I didn't trust the coach.. but I haven't got to share with them what has been going on with Sweet Pea.. and then what if she starts having some major PANDAS stuff going on while she was there..

But it was late(after 9PM) and the reason the coach invited BOTH of my girls to stay with them is that both of them Princess and Sweet Pea(the wife is Princess coach and they have a dd Princess age, and the husband is Sweet Pea's coach and a dd sweet Peas age) both had to be at the softball field at 7AM and with the drive from our house to the field being so long they wants our girls to be able to sleep in and get some rest (they live 15 mins from the fields) I had Sweet Peas antibiotics with me because I knew she was going to need it at 8pm so I gave it to her during the game..

Even though I was worried I let her stay because Princess was going to be there also.. So I gave Princess the Motrin to give Sweet Pea a dose at 11pm and all went well..Sweet Pea had no issues Friday night and had a blast spending the night with the coaches dd..

Here are a couple pictures from Friday's night game.

Up at Bat.

Steeling 2nd.
Saturday May 29,2010

NO PANDAS issues at all.. She had a very long day.. at the ball fields from 7am till 9PM Sweet Pea played in 3 softball games and Princess played in 4 .. She was tired and took a shower and fell right to sleep Saturday night but there was no crying, no moodiness, no sadness, no clothing sensory issues.. Nothing... she was perfectly fine.

Here's a few pictures from Saturday at the tournament.

Sunday May 30, 2010

Another PANDAS free day.. another very busy day.. Sweet Pea got sun burnt, a very hot from being outside all day long, and she got a bug bit on Saturday that was bugging her so I gave he Benadryl and that made her even more tired on top of the long weekend of ball she had.. So at 4pm driving home from the ball games she fell asleep and slept till 10pm she woke up at 10pm and fell back to sleep at 11pm and slept till 6:30AM on Monday morning..

but nothing PANDAS related to report for Sunday. Nothing at all.

As for the softball tournament on Sunday Sweet Pea hit her first hit since starting travel fast pitch softball this year(she normally gets a walk since she is short and it's hard pitching to a short batter she is 8 playing on a 10U team) but she hit a line drive into center field past the pitcher and short stop.. I was so excited for her.., but they lost there game on Sunday so was out of the tournament..

but her sisters team kept on winning so it was another long day at the fields.. Princess team finished in the top 4 taking 3rd place.. for the 14U's. Monday May 31,2010

I don't know what sort of day it was.. I know that sounds a little odd.. but she was moody today.. but not the kind of moody where she was biting peoples heads off for no reason.. she just was moody when she didn't get her way, or we didn't do something right when she wanted us too.. I gave her Motrin it didn't get any better.. She was perfectly fine when she got exactly what she wanted but was whinny when she didn't .. So I found myself correcting her alot today.. I don't think it was PANDAS related.. I think it was long weekend and being tired. This went on all day today. She had woke up early at 6:30AM and stayed awake she was also taking Benadryl for some bug bits that she had a bad reaction too so that was not helping her sleepiness moodiness..

around 6pm this evening she seemed a little on the hyped up side, just laughing and laughing and for no reason what so ever.. she had been running around with friends.. and just seemed a little too hyper I guess.. Maybe it was nothing.. Maybe it was a normal reaction to being tired.. I know when I get over tired I tend to act a little hyper and talk alot and find things that are not funny to be funny.. But then everything she does these days I find myself questioning if it is normal or PANDAS.. but my gut tells me her actions today were being loopy on the Benadryl and being tired from her long weekend. She fell asleep early(for her) this evening at about 8:30pm and went down with no fears or any issues.. and we had no clothing issues at all today either.. So I think I'm going to mark this day a PANDAS free day..

May 27,2010

Today we had a 1st... It was the 1st time I became one of "THOSE" mothers.. the kind who others look at as over reacting to small things.. Only with Sweet Pea strep isn't a small thing.. Each exposer to strep could leave her brain damaged.

This morning she was having an Ok sort of day, no issues with sensory or clothing and no crying fits or melt downs, but she did seem a tad on the moody said so I gave her Motrin and sent her off to school.. Around 12 or a bit after one of Sweet Pea's friends mom IM'ed me to let me know that she just had to go to the school to pick her dd up(who is in Sweet Pea's class) She had thrown up and her throat hurt.. While there the mother over heard another of Sweet Pea's friend saying "my throat hurt and I don't feel good at all" The teacher told her ok go sit back down and finish your work.. I know there is strep going around the school like crazy.. So I thought about it and thought it would be best if I got Sweet Pea out of there and ask that her class room gets scrubbed down before school on Friday.
They sort of looked at me like I had two head when I told them the reason I'm taking Sweet Pea out of school the rest of the day.. You know I'm taking *her* out because *other* people are sick.. but I really threw them for a loop when I asked them to scrub down her class room and if they couldn't get that done then she wouldn't be back tomorrow either..
Yes.. I'm Now one of "THOSE" moms.. but I guess with a child with an autoimmune disorder and antibodies that attack her brain I HAVE to be..
Anyways I brought her home and she had a great afternoon.. no issues until close 7pm when she started getting moody as in biting peoples heads off again, so I gave her more Motrin and that seemed to help..
She went to bed without me needing to be in the room with her... ONLY around 1AM she woke up saying the blankets were hurting her legs like things were crawling all over her and driving her nuts.. BUT 1) she didn't have the blanket one(I know this because she was sleeping in my bed) and 2) there was nothing at all crawling on her....
THANKFULLY!!!!!! Sweet Pea was smart enough and not gone far enough(PANDAS wise) to still think clearly.. she looked at herself.. and said well there is nothing on me but it still feels that way.. Then she stopped looked at me and said " MOM you forgot to give me my medicine tonight before bed" and sure enough I had forgot.. we got up gave her the antibiotic and though she continued to itch things that were not there on her legs.. She went back to sleep and woke up Happy on Friday.

May 24,25, &26

Been a very busy 3 days.. all sorts of doctor appt on Monday, I worked on Tuesday and then again today.. When I work I tend to not find time online.. So I just jotted down a few things about these days on paper and I'll post them now.

Monday May 24, 2010
This was a PANDAS symptom free day.. :-)
busy day running for Sweet Pea.. She couldn't go to school this day because we had to leave at 9AM to get to her 11AM appt with the counselor.. Today Sweet Pea went in alone, She told D. her side of the story of what has been going on with her, what it felt like when her cloths would hurt and so on. She shared that she was afraid of alot of the things that has happened to her, and what is going on with her her body and brain and her fear of the pain coming back..
She also saw Dr. T he said the rash was a strep rash.. sort of a break out rash due to the strep she had picked up from Mr Man or what was left over in her system from her own strep infection from a few weeks ago. but more then likely she picked it up from Mr. Man but the antibiotic killed it quickly.. Only we Now are sure due to the rash that her body would have had to make a few more antibodies. :-(
But she had a very VERY good day.. no issues at all.. no moodiness, no sadness, no sensory stuff.. just a perfect day all around..
I thought we had another case of strep in our house though.. Princess my oldest throat has not stopped hurting since I had taken her to the doctor the past Thursday.. and on Monday she had a fever to boot.. So after all of Sweet Pea's appt.. I took Princess in they ran another strep test.. It was Neg.. Thank you Lord.. after her exam they determined her issues were sinus infection and started her on an antibiotic ..

Tuesday May 25th
I considered not sending her to school today because I found out from some other kids parents that those kids who go to Sweet Pea's school tested Post. for Strep that day.. There was 4 kids that test Pos on Monday from her school 3 of them in the 3rd grade, 1 in the 4th.. Sweet Pea is in 2nd.. but just the thought of that much strep going around her school had me wanting to keep her home this whole week.. Her last week of school... What I really want to do is put her in a bubble and keep her germ free...But I sent her..
She had a great morning and afternoon.. no symptoms at all. But then after dinner she started acting moody, crying and getting mad, mostly at Mr Man my 10 year old(he tends to take the blunt of her bad attitude moodiness from this, I think because he fights back with her where the youngest and oldest just gives her things to make her happy) Then at bed time she went to bed but came out tears in her eyes 20 mins later telling me she "had" to be with me because she was really scared but she didn't know what she was afraid of.

Wed. May 26, 2010
She was Moody again today, but for the most part not too sad.. Only time she as sad was when DH raised his voice at her for her yelling at Ryan while they were playing.. She gets upset with herself for being moody and she doesn't know why she is moody and yelling at people.. but when we point it out to her that she is doing it she gets sad and upset at herself for it..(she did not tell me this, but her counselor told me she shared that with her, that "she said she keeps doing bad things by yelling at people and she doesn't want to be bad, and she is really sad that she does it, and she is scared that she doesn't understand why she is doing it) She was still pretty short tempered all evening.. and then at bed time we had crying again.. Really as soon as it got dark out she didn't want to leave my side again.. and when I tried to get her to go to sleep in my bed with the light on she started to cry she "needed" to be with me.. So I didn't push any issues I just went in laid down with her for 10 minutes until she was asleep..
Darn stupid Strep anyways.. wondering if I should have just kept her home from school this week.. Seeing how she was back to symptom free on Monday she went to school Tuesday where strep seems to be running though the building in every grade.. and she starts the symptoms again that evening and had them all day today..
I know before school starts next year I'm going to have to print out information on PANDAS meet with the principle, teachers and even the secretary.. explain what it is, and how important it is that WE(as in all of us) try to keep her exposer to stress as far away from her as we can..
I didn't think of this but the teacher I worked with today at one of the other elementary school gave me this idea.. I was telling her what was going on with Sweet Pea and she told me I need to talk with the teacher, because she knows if she was her teacher if there was strep in the class or in one of the other classes that uses her room and decks.. knowing what is going on with Sweet Pea she would have the room clean each and every time.. As it is now the desk and stuff only gets scrubbed down once a week.. no matter who gets sick in there room.. the desk only gets clean on Wed. If she knew one of the kids had strep she would make sure the room got clean that day as well as there weekly cleaning.. to keep the room safer for Sweet Pea. This is a 3rd grade teacher maybe I should change schools and ask for this teacher she seems so understanding.. I just pray Sweet Pea's teacher next year is the same and doesn't roll her eyes at me like her teacher did this year.. because if I don't get a teacher willing to help me keep my little girl safe.. I'm going to have to find a teacher who will.. and if that means a new school I'll have to do it.. even though it would break Sweet Peas heart to leave her friends.. I don't' want to have to do that..

So this is now being added to the prayer list.. along with the antibodies to stop attacking her brain, and for her not to come in contact with strep.. and for her to have symptom free days, and her not to have to life in fear of all of this, That we get understanding teachers who are willing to help us in this battle..
Oh crap I'm crying again... every time I sit down and write or type about this or read stuff on PANDAS or think about what my baby girl is going though.. I end up in tears..(when I'm alone and she isn't watching) ~sigh~

May 21,22 & 23, 2010

Sorry I never got back over here to tell ya all how the rest of Friday went.. I was a bit busy with my oldest.. who had her 8th grade spring dance Friday night and her J.O. state volleyball tournament on Saturday and Sweet Pea had a fastpitch travel softball tournament Saturday..This weekend has been crazy.... but fun.

So Back to Friday the Ibuprofen has done wonders.. She came home from school happy and excited and full of life.. Maybe a bit hyper.. I don't really know.. it has been forever since she 1st got sick with the Mono which zapped the life out of her, that I don't remember how active she was before that.. but the girl came home from school so full of energy.. she was doing cartwheels, flips and cartwheels into back bends.. not just a few times but pretty much non stop for an hour.. she went and played at my grandma's to play with grandma's neighbor girl and grandma said she was non stop running and playing and never sat the whole time there just go go go.. but she wasn't sad.. she wasn't moody, she wasn't crying, she wasn't mouthy or ready to bite any ones head off... she was happy, playful and full of life.. So Maybe that is just her, but I wonder... wonder if it is a bit too hyper.. I don't know. It's a little more life then I'm use to seeing..

Sadly I really haven't been with her much the rest of the weekend.. I was with my oldest at a volleyball tournament Saturday while DH had Sweet Pea at her softball tournament..
I was almost afraid to send her in fear of her being moody biting peoples heads off or just getting sad and crying for no reason that she or anyone around her would know of.. and I was afraid of how DH would deal with it if it did happen.. He has never been around her for those times he has seen her flipping out about things hurting her but I have always been around and I have always been the one dealing with it.. So it was scary for me to step aside and let him be the parent to care for her.. so I grilled him over and over about what time she get she antibiotic in the morning and in the evening.. and must have told him how important it is that she doesn't miss it only about 900 times.. and since the Ibuprofen had worked so well on Friday.. I gave him a bottle and dropper and told him every 6 to 8 hours make sure she got that also.. I explained to him why and how she acted on it and without it.. I told him his job for the day was to just make sure she was happy.. told him how sometimes she gets sad for no reason or things bug her for no reason.. and I told him if he see that to try to take her aside by herself till she starts to feel better and if she doesn't then see if she would like to go home but not to just take her home.. make sure it was her choice because making her leave when she didn't want to could just make things that much worse.. I mean I was just worried.. and for no reason at all...
She was over the moon happy ALL day long Saturday.. according to DH she was happier and excited more then he had ever seen her. She has Always loved playing softball.. though at her last tournament she was having a symptom day and she didn't smile much and cried alot.. didn't want to leave wanted to play but she looked sad the whole time.. from all the pictures he took this time my baby girl was having the time of her life Saturday..

Today Sunday she has had a symptom free day perfectly normal happy little girl and I did not give her any Ibuprofen at all today.
So over all after Friday morning and me starting the ibuprofen along with the Antibiotic for both Friday and Saturday she seems to be doing wonderful..

OH!!!!!!!
I almost forgot.. That on Sunday evening around 6pm she came to me telling me her back was itching... I looked at it and she had that red prickly rash all over her back again, I tried to get a picture of it because it was much redder then it was earlier in the week.. But It didn't show up.. and unlike the last time it was only on her back not her legs..
She sees the doctor tomorrow afternoon so I'll be bring this up to him..

Tomorrow Sweet Pea will not be going to school we have an appointment with the counselor at 11am so we are leaving at 9am to get there and then at 2pm she has the appointment with the doctor.. I will keep ya posted.

Seems like an endless stream of tears..

My tears not Sweet Pea's.. though she has had a few of her own this morning.
Sweet Pea had a hard morning. She woke up all sort of jumpy like she had to just rush rush rush.. I didn't really understand that need because we woke up at normal time.. she hurried down her breakfast.. took her A/B got dressed quickly(which is a good thing, meaning there was nothing hurting her clothing wise this morning).. she brushed her hair and teeth.. grabbed her bag and was ready to go.. All while the rest of us was still in slow motion in our PJ's and eating breakfast.. She just couldn't sit still she would sit get up walk, sit get up walk, sit get up walk.. all the while getting more I don't know what word to use.. worked up, up set, Panicky that we were going to be late to school.. kept barking orders Hurry up.. Get moving, do you need to do that now, Leave that just get your shoes on..
I tried to tell her we are all Ok we have plenty of time.. but she didn't seem to grasp that concept.
It was 15 minutes before we had to leave when she started yelling rudely at us.. You always make me late, I can't handle this.. we have to go right now...
At that point Mr Man said to her "Chill Sweet Pea" she just sort of shut down.. her face dropped she looked so sad, it wasn't a loud cry but tears started falling from her eyes..
It was then I figured I would try the Ibuprofen thing and see if that helps her.. I just put my arm around her walked her to the kitchen gave her the Motrin. she still had tears dripping down her face though she was looking down because she didn't' want me to see them. I said honey are you sad, she shook her head yes, I said what are you sad about she wouldn't talk, she had her head down hair all over her face she just wrapped her arms around me and started crying more..
we moved to the couch and I just held her in my arms until it was time to go.. we were walking to the van to go to school and she had one lone tear drip out of her eye and down her cheek.
I kept it together with her around.. and while dropping her off at school.. but as soon as she was out of view.. I started crying and I can't seem to stop. My heart is just hurting so bad right now.
My poor baby girl is scared, worried, sad and at times in pain.. and she doesn't know why, which scares her more and makes her more worried, and makes her even sadder. I hate this.. I hate every tiny part of this..

May 20,2010

Today I guess was a good day for Sweet Pea.. no major episodes to report.
Today both my oldest dd Princess and myself were tested for strep.. both was neg thank goodness.. That only leaves DH to be tested..
I was going to call the doctor about Sweet Peas rash.. only when she woke up this morning it was gone and hasn't came back. Makes me wonder if she just got a tiny reaction of strep from being exposed to it and it came out in the form of that rash, but that her A/B she is on took care of it quickly..
However I did see some PANDAS signs today in her.. it was the snapping at people easily.. and she also had herself starting to get worked up over the tiniest things.. such as my pen dieing in the middle of me signing my name on her school papers.. This set her off because now it's done wrong, it doesn't look neat, It isn't perfect.. This sort of perfectionist, worrying about every tiny detail thing was back today.. BUT it didn't send her off into a crying fit like I thought it might like it has in the past when she has been sick or not feeling well. but it was like the start of it was going to happen but then didn't progress.. and it wasn't just the pen dieing.. alot of different things just not being done just so today seem to get her into this almost panicky state.

Then we had a bit of a set back at bedtime also.. Last night she wanted to sleep in her own room in her own bed.. tonight she was afraid to be in a room unless I was in it.
So I can see some of the symptoms but no major episodes.

Almost forgot to mention... this morning when I went to get her A/B before school.. we had a little mishap with a glass jar of applesauce breaking all over the floor, just as my brother showed up with his puppy needing me to puppy sit and just as DH was walking in the door from getting home from work... in he mist of all of that mess and confusion.. I forgot to give Sweet Pea her morning dose of Antibiotics.. and it didn't hit me until I went to give her the night time one.. I picked her up a refill of it this afternoon because this evening dose was to be the last one in the old bottle.. so it confused me when there was exactly enough left in the bottle for a dose tomorrow morning.. that is when it hit me what happened this morning..

So this latest symptoms she had today and this evening.. could have been from that, could have been from the exposer to strep this week or a combo of both.. I will HAVE to keep my head in this game better even when the world is crazy around me..

May 19, 2010

This PANDAS stuff is all so new and confusing.. When she is moody and crying and sad.. is it normal childhood stuff or is it PANDAS... how do you deal with people when they think your making this sort of thing up and since your child seem fine and normal to them.. They don't think they are sick.. or they say.. OH it's just strep no big deal.. When to your child IT IS A BIG DEAL.. on that could have negative lasting affects on there life..
Am I going over board when my DH sort of is losing his voice and coughing and he thinks it's just a cold and I am screaming at him that HE HAS TO GET TO THE DOCTOR and be tested for strep or does he want his daughter brain under attack. or is it just a normal cold BUT there is Strep in the household already so isn't it better to be safe and ear on the side of being safe and take the time even though you don't have the time to go and see the doctor.

Ok 1st off Sweet Pea as far as PANDAS sort of symptoms today seems good.. she wasn't crying or moody or yelling at people today and no sensory issues stuff going on today either... THANK YOU LORD for answer prayers..
BUT!!!!!! and once again I don't know if I'm over reacting or not.. but she broke out in that bumpy rash.. that I have been noticing over the last few months.. What I have been seeing is that every time she was crying her eyes out in pain before I even heard of the word PANDAS that 9 out of 10 times she had that rash on her legs or bad.. What it sort of looks like is a Scarlet Fever rash. I tried to take some pictures of it but they didn't turn out all that well.
BUT she did break out with this same sort of rash ONLY LOT worse from head to toe a day after testing Pos for strep the last time which was April 30th.. I gave her benydrel and the rash got a bit better didn't go away totally but since it got better by the next afternoon when the doctor saw her they called it a reaction to Amoxicillin and changed her Antibiotic.. but then did tell me that it presented itself like a rash from the strep

here are the pictures I tried to take of it this evening after dinner.
if your look up close to her shirt and neck and over her shoulder you can see it a little better though it is down her back as well.. just it doesn't show up well in pictures.
here is a closer up few.. can you see how it looks bumpy well not her spin but the little redish sort of pimple bumps.
and it's not just on her back.. It's on her legs as well.. here is a shot of her leg..

So I wish I knew what to do now.. Do I call the doctor?? Dr T isn't in town till Monday.. she isn't showing signs of being sick.. but yet she had some PANDAS stuff go on yesterday and today the rash.. this not knowing what to do is going to make me nuts..

I did find today a PANDAS Forum where I can talk with other parents who children have PANDAS.. and they have been helpful.. Like This little bit of information I found there today
"Ibuprofen is an anti-inflammatory - if the theory is correct that PANDAS is caused (or in part caused) by inflammation of the basil ganglia, then an anti-inflammatory would reduce inflammation and improve symptoms. I'm just thinking out loud here, but I would think in order for it to have any significant affect, there would have to be some other combination (like zith or augmentin) to combat the CAUSE of the inflammation or relief of symptoms would be nil, mild and/or brief."

I think I'll be spending alot of time over there trying to learn as much as I can and asking alot of questions..

So to close this post for today.. SWEET PEA went to sleep in her OWN bed tonight.. not just in her own room on the floor or in her sisters bed.. or in the room with the boys.. or where she has slept most of the last 15 months in my bed.. But in her room IN HER BED... and this was All here idea... this is a PANDAS thing I know alot of kids don't like to sleep in there own room this this extrema fear of it is a PANDAS thing so her doing this is a big improvement.. so hopefully what ever little set back I saw yesterday and this rash thing isn't going to mess her up again..

Just a few more things on my mind tonight.

With Sweet Pea showing some of the symptoms again.. and her exposer to Strep again.. This means there are antibodies attacking some part of her brain again and I don't know how big a part, and if it will do damage, and if it does, how much and will it heal itself or will it be permanent.
All of this scares me to death.....
..........
I had to stop right there while I was typing this.. I had to grab my Bible study journal. God just spoke to my heart as I started to say how scared I was.. what ran though my heart is "Do not be afraid" and this overwhelming urge to flip though my Journals what jumped out at me was the journal I wrote a few weeks ago on I Peter 1:13
The NIV reads like this "Therefore, prepare your minds for action; be self-controlled; set your hope fully on the grace to be given you when Jesus Christ is revealed."
But I used my KJV Bible this day and it reads like this.
"Wherefore gird up the loins of your mind, be sober, and hope to the end for the grace that is to be brought unto you at the revelation of Jesus Christ;"

Here is what I wrote that day that God just laid on my heart to read while in the middle of writing this post..
~~~~~~~~~~~~~~~~~~~~~~~
I Love That Phase "Hope To the end"
I mean just reading that part of the verse reminding me of that Blessed Hope , Gives me Hope.
When everything around you is caving in everything is going wrong, when everything seems over whelming.. We can hope to the end..
Not just till the end of the trials, But till the Lord returns or calls us home..
Because no matter what... NO MATTER WHAT!!!!!
One day this will all be over , we will be with the Lord.. and all of this will be for His Glory and we will say Thank You Lord.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This also brings to mind. I Peter 1:7 That the trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ:

WOW!!!!!!!!!!!! Isn't God Good...
I totally started this post just about at the point of wanting to cry and freak out myself.. scared out of my mind about what is going on with my baby girl.. and worried about her Brain.. and God tells me to STOP... He leads me to verses that will comfort me.. turning my eyes back on Him.. reminding me that I have a heavenly father who is in control of all things.. nothing happens that He does not permit. I might not understand it.. and I might hate every minute of watching my little girl go though this.. but I can trust that God will work this together for His good for His glory.. and I just need to surrender this unto Him.. and in Him I can rest.

May 18, 2010

I'm sad tonight, because Sweet Pea is really sad today. :-(
She doesn't understand it.. She asked me "why is everything making me sad"

Today started off wonderful.. no clothing issues at all.. nothing is hurting her and she was her happy, cheerful, normal self..
When she came home.. I saw the change in her.. she was snapping at people when they asked her questions, when they were doing things she wasn't 110% happy with them doing.. and even when they were doing thing she wanted them to do.. she would just sort of bit there heads off... And though I have seen this from her alot over the past few months.. It's not who she is.. it is not what she does when she is herself..
I understand why she was acting that way.. but I still felt the need to call her on it and correct her.. not yelling(to much I think a time or two I raise my voice a little more to get her and Little Man's attention) But every little thing set Sweet Pea off.. either by biting those around her head off for little things they were doing, or by having Sweet Pea in tears over the tiniest of things.
The last time I had to get my tone a little sharper was while Sweet Pea and Little Man was watching a movie laying on the couch together(Little Man himself has been out of sorts all day.. after dealing with Sweet Pea and PANDAS I 1st thought maybe he has it also.. but I can't be thinking that way with every little thing.. I have to remember that Little Man had 5 vaccinations yesterday at his 5 year check up and all of my kids were cranky after that)
Anyways they were laying on the couch together and Little Man didn't want his blanket and he tossed it to Sweet Pea.. she started to scream at him that she didn't want it, and she threw it back at him.. Little Man got mad and started yelling at Sweet Pea and threw it back at her.. When I took little harsher voice and told them both to knock it off.. That sent Sweet Pea off crying.. Not a totally gone no reasoning with her fit sort of cry, just an extremely sad crying.. She took off to my bedroom, opened up DH's dressers doors and sort of hid behind them crying.. When I went to talk to her she didn't want to talk..
So I grabbed her up into my arms hugged her really close and said to her "honey I don't know what is bugging you, if you don't share your feelings with me I can't help you do anything about it, you have to tell me what is wrong"
She snapped "you keep yelling at me" Even though I never yelled.. I just spoke a little more strongly then normal talk.
So I said "Sweet Pea, you were being rude and mean, and though I love you, you can't treat other people that way" She said " but he put the blanket one me" I told her all she had to do if she didn't want it wasn't to yell at him but to just say no thanks and put the blanket on the ground.. and that would have ended the whole thing..
She started to cry again and she wrapped her arms around my neck hugging me and just cried and cried and cried.. and she said "everyone keeps bugging me" So I took that to mean everything is bugging her so I asked her "has everything been bugging you today?" She said "yes and I don't know why, Why is everything making me sad today" and she continued to cry.. I said to her " baby, I'm not 100% sure why things are making you sad and bugging you.. but I think it is because you might be getting sick again, but sweetie hopefully the medicine Dr T has you on will keep you from getting too sick" She stopped crying and went back out to finish watching the movie.. but when it was over she was afraid to go to sleep without me so I laid on the couch with her and she laid on top of me with her head on my shoulder and she fell right to sleep.. When I carried her to bed, she woke up and complained about her ear hurting her.. This was the 2nd time tonight she mentioned that.. if she say it one more time I think I should take her in and have it looked at.. But goodness I don't know what they will do if it is an ear infection seeing how she is already taking an antibiotic twice a day..

This has me thinking about something Dr T mentioned to me when he 1st told me about PANDAS.. when talking to me about how many times she tested positive for strep over the last 15 months.. He said she also had a few ear infections which could have been strep but as soon as they saw the are infected they didn't look any farther for strep.
I guess I'll just see what she is like tomorrow.. This is all new and so confusing.. this not knowing what I should do..

I copied this part from Pandasnetwork.com
•Choreiform movements; involuntary or irregular writhing movements of the legs, arm or face
•Presence of tics and/or hyperactivity
•Irritability, temper tantrums, or mood lability
•Nighttime difficulties
•Severe nightmares and new bedtime rituals or fears
•Separation Anxiety
•Age regression: going back to younger developmental stage
•New handwriting problems, loss of math skills, sensory sensitivities

These are some of the ways Pandas symptoms can present themselves after being exposed to strep.. Which she was since our 10 year old has it.. and normally hers shows up in the form of sensory sensitivities and things hurting her skin..
Not today thank you Lord and I pray it doesn't..
Today she had the Irritability, temp and mood along with Nighttime difficulties with maybe a little Separation Anxiety(the not wanting to sleep unless I was right there with her)

I should also point out that while she kept having issues with these symptoms though out the day.. her whole day wasn't bad She got a 100% on her spelling test, got all her make up work from missing school yesterday done before the 1st bell rang this morning ... both of these things had her extremely excited when she 1st got home from school.. she was jumping around all happy about them.. She was also very happy and excited about the art show that was at her school this evening.. and she had no issues while at the art show either..
The majority of these issues though I could see them increasing a little more each time after she got home from school.. mostly happened after or around 8pm this evening..

May 17,2010

Today was Sweet Pea's 1st visit at the Child guidance and counseling place.. I'll get into that here in a second.
1st Sweet Pea had another perfect day nothing bad or good to report.. Just a perfect normal no problem day at all... she was a bit worried about meeting with the counselor just because it was something and someone new and she is still my shy one.. but she never spoke those words out loud I could just tell by how quite she was today.. she normally to me anyways is a chatter box.. and she hardly spoke much at all on our 1 1/2 hour trip from our house to the counselor. Though once then she seemed to warm up.. The lady she will be working with is great... She put both me and Sweet Peas at ease.. and in the course of questioning in and getting background and such on Sweet Pea.. she was asking her about school, sports other activities.. Sweet Pea told her about Awana's and D(that is what I'm going to call the counselor here at the blog) said "I know what Awana's is" I said "oh most people don't" Then she asked Sweet Pea.. "Well since you go to church and Awana's I know they talk about God there, Can you tell me what God means to you?" Sweet Pea looked at her and said "Well you see it's like this... Jesus died on the cross for our sins so that we wouldn't have to.. and if you ask Jesus into your heart to save you He will and you can go to heave" D asked her "have you ever done that" Sweet Pea said "yes" D asked her "when" and Sweet Pea answered "when I was 5 years old" D then said to her " Can I tell you something, I did that also when I was 8 years old"
In more of our conversation I found out D's husband is a Pastor.. but we never got into at which church.. because after all we only had so much time with her and we were getting her as much info as we could on Sweet Pea..
But this in itself was an answer pray of mine.. one of my fears of counseling was that we might get someone who didn't believe in God and would would try to tell my child there was no God. If that was the case we wouldn't have been there long but we have never did counseling and I didn't know what to expect.. But since I wasn't going to a "Christian Counseling Center" I just started Praying God would place us with someone who was a Christian and understood what we hold to be truths. God answered my prayers on this..

As for the route we are going.. I explained the PANDAS to her and she has heard of it and has done a few studies on the affect that strep has had on OCD.. but she has never seen it present itself like it has with Sweet Pea with the pain of things touching her skin. at this center.. they have the child's psychiatrist and neurologist right there working with them.. D is going to work with Dr T(Sweet Pea's pediatrician) and also the other doctors.. She has to have a few counseling sessions with Sweet Pea before getting her in with the child psychiatrist and neurologist, but she is going to be talking with them both right away about this and sharing and learning with them on how to help Sweet Pea. Though this the 4 of them will get Sweet Pea the help she needs.. At this place.. they don't just sign over the care to the psychiatrist or neurologist they continue with the counselor also though out treatment.. So What D wants to work with Sweet Pea with.. is to eliminate her fear over this.. She said even though this was a medical reason and condition that brought this on.. It was still a trauma in her life how she has been in pain for so long.. and her goal is to help eliminate that fear she now has from this.. and give her claiming strategies to help her when she is starting to fear thing might hurt her again.
Like Dr T. she said this is the 1st case of PANDAS she has worked with so she will study and learn what she can on it and will be contacting Dr T. also.. Dr T is on vacation this week.. But
Sweet Pea meets again with D next Monday morning and has a follow up appt with this with Dr T Monday afternoon... So I can talk with Dr T. myself getting him the name and numbers and everything he will need so they can work as a team.

NOW FOR THE BAD NEWS
Mr Man my 10 year old who was running the fever last night.. tested Positive for Strep Throat this morning. He is really sick at the moment.. and I hate seeing any of my children that sick.. BUT we not only need to pray for his recovery.. but need to be in prayer that this round of strep leaves my household quickly and that it doesn't get to Sweet Pea where she builds up anymore antibodies to attack her brain more and send her back into episodes of the PANDAS..
The doctor I saw with Mr Man today was the same doctor who saw us when Sweet Pea had the episode with the splint on her finger.. and knowing about Sweet Pea she decided to treat my Oldest Princess and my youngest Little Man also with a round of antibiotics to kill whatever strep they may have or to help keep them from getting it.. So that is where we are with that.. I'll keep you all posted.. and Thank you for the prayers..

May 15 & 16, 2010

May 15, 2010 Saturday was a great day.. my youngest was having his family birthday party this day.. and Sweet Pea laid out about 8 outfits(this from the girl who has wore the same shirt, in two different colors ever day a month or longer) and asked which one I thought she should wear.. One of those outfits were a long pair of khaki shorts with a long sleeve shirt.. another one was a pair of blue jean shorts.. All 3 of those items were things she would have started crying her eyes out about if I would have brought them up as an idea to wear even just last week.. it was a warm day and she ended up in a pair of shorter lighter plaid shorts but they were zipper and button shorts not her normal all cotton with big soft waist band.. So still an improvement.. Party went great she had fun and afterwards wanted to go home with my mom and dad to spend the night at grandma's house so she did..

Sunday May 16, 2010 another perfect day, really nothing new to report as far as how she is doing.. she is a bit nerves about tomorrow and going to see the counsellor.. she hasn't said this out loud but she is in my bed right now wanting me to come and sleep with her.. So I think that is the reason why..

The Big Thing today is that my 10 year old Mr Man.. is sick.. After church this morning he said he wasn't feeling well and sure enough had a 102 temperature and he is complaining that his throat is killing him... in and of itself this is no big deal around my place ..... BUT I'm so worried about what it might do to Sweet Pea.. if this is strep, then she has been exposed to it again.. and could create more antibodies and could be going down hill fast again...

Please Keep this issue in your prayers... I HAVE to keep her healthy..

May 14, 2010

SHE WORE UNDERWEAR!!!!!!!!!!!!!!!!!!
need I say more?!?!?!?!?!? LOL
I mean that pretty much sums it up.. I didn't even know she put them on this morning when she got dress.. but she got up got dressed(in shorts and a shirt, which were normal size on her and perfect for our mid 70 degree weather today).. I didn't ask about underpants because I have just sort of excepted that they hurt her and she isn't going to wear them.. but this afternoon after school she was in the living room doing cartwheels and she fell and her shorts came up and there they were UNDERPANTS!!!!!!!
I didn't say anything or drawl attention to them.. didn't want embarrass her... BUT OH MY GOODNESS.... what a big huge step this is... each day this week.. EACH DAY... she has been getting better and better..

She did start to cry this evening but only for a second.. She had softball practice this evening.. and her daddy(aka DH for Dear Husband in all my other blogs LOL) wanted her to wear her uniform shorts from her travel softball team and wanted her to put on sock and wear her spikes. The idea of the ball shorts and there harder tighter elastic waistband had her just about in panic mold.. she started crying right then and there..
I put a stop to it quickly by letting it be know there was no need to wear them.. This wasn't a practice for the travel team(where they want them in uniform) it was for rec ball.. So her soft cotton big thick no elastic waistband shorts and no socks with her tennis shoes instead of her spikes were good enough..
I did ask her what she planned to do when she needed to go to a travel practice or tournament.. she said.. "i'll have to deal with the pain then.. but I don't want to now" I once again offered to take her off the travel team this summer so she didn't have to wear the uniform and the tall tight socks and stuff.. but she really wants to keep playing even if the cloths are hurting her..

I'm hoping that the cloths are no longer hurting her since the antibodies don't seem to be affecting her brain at the moment.. but she still has the fear of her cloths to work though.. since they were hurting her and she totally remembers that pain... I guess on Monday when we see the councillor.. we will be learning more on that side of things..

May 13, 2010

Sweet Pea had another perfect day.. We had another big step again today.. She wore her gymnastic leotard something she hasn't done in over a month.. At 5pm I told her it was time to get dressed for gymnastics and she said Ok.. she walked into her room and I wasn't sure what she was going to come out wearing but she came out in her leotard.. I had to turn away so she didn't see the tears in my eyes.. tears of joy that it seems that each day there is something new with her getting better.

I need to keep in mind though that she can still have relapse and that this might not last.

BUT the pain she has been in from her cloths or anything touching her isn't there.. which means her brain isn't under attack at the moment by the antibodies.. and all of this is just an answer to prayer..

She did great in her gymnastic class had a blast.. On the way home I asked her if the leotard was hurting her she smiled really big and said.. "No my cloths don't hurt anymore.. Well except for socks and underpants, long sleeves and blue jeans" I said "that is wonderful.. but how do you know bluejeans hurt... you haven't tried to wear them" she said "yea that is true" and then she LOL...

to here her LOL instead of crying in pain is such a wonderful sound.

Wednesday May 12,2010

Wednesday
May 12, 2010
Sweet Pea had a great morning.. she is still not wearing underpants or socks and she is still only wearing shorts or dresses no pants.. but she wore a t-shirt today in a size 8 that wasn't too big or baggie on her.. there was no fights, crying or any issues at all this morning getting her off to school.. She even put on a hoodie sweatshirt without being asked or told and didn't complain about it once which was good seeing how it was only in the 40's this morning.
The rest of the day was perfect again..
She did get a little bit panicky when it was cold and grey and she was to have softball practice and I mentioned that I thought it would be best if she tried to find some sweet pants to wear instead of short.. but right about the time I mentioned that it started to rain and softball was cancelled..Thank you Jesus.. I really didn't want to fight with her about that issue and make her cry by forcing her to wear pants.. but I didn't want her to get sick being out in the freezing cold damp weather in shorts.
Another improvement I saw today which I haven't seen in months.. is after her bath tonight.. She got right out of the tub and put cloths on... Normally it is get out of the tub.. cry(not a melt down and normally she doesn't even say anything to me I just hear her crying)about how her cloths hurt her and stuff.. She has taken to sitting in a towel for about an hour after her baths just so she is 110% dry before putting her cloths on.. Not today.. she got right out dried of and put her cloths right on..
So it has been a good day.

Insurance issues.

On other fronts with this PANDAS stuff.. we were at the last dose or two of Duricef so I went and took the prescription over to the drug store to be filled.
(little background here on insurance we have our main insurance from DH's work, but when he got and had no insurance we all were placed on medicaid Care Source.. When DH got called back to work his insurance was back but they didn't take away the Care Source for the children.. Just told us to use it as a secondary insurance)
Ok back to today.. The Drug Store just called me and told me the Care Source will not cover Sweet Pea's Duricef because it isn't one of there preferred listed drugs. I'm going to have to refill this prescription every 8 days for maybe the next 5 years.. The copay with the other insurance isn't all that much for 8 days only $6... but when your talking about that every week for the next 5 years it will all add up.. Don't get me wrong something like $.77/per day for her to be well is soooooo worth it.. But we are still going to have the doctor be in contact with the insurance company let them know what is going on and see if we can over turn there decision on this matter.. So this will be added to our prayer list..

Tuesday May 11, 2010

Tuesday
May 11,2010
SHE WORE IT TO SCHOOL!!!!!!!!!!!!!!!!!!!!!
Ok you all are not understanding how excited I am about this.. But Sweet Pea has wore nothing on her arms in over a month and a half and then it was Aubrie size shirts, she has basically been flipping between two silk tank tops and two sundresses and that is it.. This is in her size and the arms are 3/4 long and they are not baggie.. AND SHE IS WEARING IT!!!!..
she did say .. "I don't know what if It starts to feel tight when I'm at school" So I told her to tell her teacher and have her call me if that happened... but I'm hoping it doesn't happen..
Update on the rest of the day.. She kept that shirt on the whole day never complained about it once.. even wore it to sleep in.. This was THE BEST DAY.. she didn't cry about anything cloths or any other thing.. Until bedtime.. she wanted to sleep with me.. but I wasn't ready to go to bed at 9pm so I told her she could sleep in my room and I would be in when I was ready.. She cried just a little bit saying she was scared.. but around 9:30pm did fall asleep and it wasn't a fit or a melt down sort of cry just a sort of sad cry. but still the best day we have had in a good long time.

Monday May 10,2010

Monday
May 10,2010
another cool day today.. Sweet Pea had a field trip at school today and had to be at the school at 7:45AM which is normally the time I wake her up so I had to wake her up early.. She wore the same sundress she wore to church on Sunday.. which I was fine with it looks nice on her and I wanted her to look nice.. only problem was it was 30 some degrees when she left for school I basically convince her to wear a baggy pull over hoodie(too big for her but would keep her warm) by telling her if she wanted to take the camera phone for pictures of the field trip she needed the hoodie for it's pockets to hold the camera because her dress didn't have any.. She 1st put it on and with in 3 minutes had it off saying it was too tight and hurting her.. but 2 minutes before her ride to school got here I told her she had to get it on and be ready.. she put it on and was just starting to complain that it was too tight when I saw the car in the driveway and I yelled "he's here" and she didn't say another word just ran out and jumped into the car all excited to go..
It did warm up to 60 so when school was over there was no sweatshirt when I picked her up.. and once at home she put on the shorts and tank again.. and was perfectly fine.. no fussing, no crying, no moodiness the rest of the night...
I gave her her meds at 7:30pm and around 8pm she came out of her room in this.
She said "mommy this shirt doesn't hurt any more.. isn't it cute.. can I wear it to school tomorrow please.." Oh goodness I'm sitting here crying again.. this time tears of joy.. this was the 1st night in such a long time I saw my little girl acting like her normal self.. picking her cute and totally her own fashion statement(she was a diva before all this.. she wanted the cutest things and she had a style all her own and she always wanted to dress up so cute) She was working on her hair.. picking out which ponytail holders would match best with the top and then said maybe we should curl my hair in the morning and then pull it into pigtails.. it has been a good while since she wanted her hair curled and she cared about matching ribbons to go with her cloths.. shoot it got to the point most days she would have been perfectly happy without cloths at all.. let alone matching her hair to her outfits... I am over the top tonight with seeing the child I had before all this started.. but I know this doesn't mean we are even close to being out of the woods.. and I fear that tomorrow morning she isn't going to want to wear the outfit she has picked out and that she will be back to saying they hurt.. Oh I pray that isn't the case but I'm afraid to get my hopes up. before she went to bed tonight she changed back into the shorts and tank top and didn't want to go to sleep unless I was in the room with her.. but over all this has been the best day in a long long time. No crying at all today from her..

Sunday May 9, 2010

Sunday
May 9, 2010.. It was another cold day out.. but she would only wear a sundress.. Have I mentioned we have given up on underwear.. she just wears shorts under the dress with nothing under the shorts.. but there was no fighting because I didn't push the issue.. To go to church she just wrapped a blanket around her and off we went.. That afternoon we went to my grandma's for a mothers day dinner.. My grandma was fighting with her to put on slippers to keep her feet warm and I had to tell grandma to just let it be, I knew it wasn't going to happen and grandma harping on the matter just made her sad and she ran up stairs and pouted trying not to cry... At this point She was back in shorts and just a tank top in 50 degree weather.. and we were eating in the basement which floor was cold even with the space heaters on.. but to the touch she was hot.. after lunch I took her temp and she was 98.3 perfectly normally but the heat coming off her body was like a heating pad.. I myself was cold so after lunch I went up stair out of the basement and told Annie to come lay by me and keep me warm.. we laid down on my grandma's bed and I just hugged and cuddled her she was so warm it really was like hugging a heating pad.. While I dozed off a bit she passed right out and slept for a few hours..
When she woke up the neighbor girl was wanting to play with her outside but Annie wouldn't put on the pants or sweeter so I told her she couldn't go out so the girl came inside to play.. and the rest of the evening was perfectly fine.. no issues with clothing or crying or anything.

Saturday May 8, 2010

Saturday
May 8, 2010
She spent the night at her friends last night took her A/B and the friends mother said she was perfect and happy all evening and all morning today.. I picked her up at 12:30pm and needed to get her home and dressed for her other BFF's birthday party.. It is freezing today high of 45 outside.. I just wanted to to dress in something warmer.. she was having no part of that.. she wanted to stay in what she had on.. what she had on was fine for playing in and they were dirty.. So I told her no she couldn't so she said fine she would wear her black shorts and her pink silk tank top.. I asked her to wear a skirt or a dress 1) she would look nicer for the party and 2) she wouldn't look so extremely out of place in 45 degree weather in a skirt as she would shorts.. sure it really wouldn't keep her any warmer and the tank top would still make it look odd.. but at least it is a dressy silky top so it would look like she dressed up for the party and nothing more then that.. She only wanted shorts because none of the other girls would be in dresses or skirts..
Pants forget it the only thing I can get her to wear these days are shorts and skirts and sundresses.. she did a little crying not a fit or anything like that just crying because I wouldn't let her wear the big size 12/14 shorts(mind you her true size is a 7/8) because they looked awful and was dirty.. So she changed into her favorite black cotton shorts (which are an 8) and her pink silky tank top.. I asked her if I could curl her hair so she would look really cute when she got there she said no she wanted to do her own hair so I asked if I could pull the front of it back she snapped at me ... NO I want it like it is... I asked don't you want to get dressed up and look really pretty?, Taylor and Lexie I'm sure are going to be doing there hair to look pretty for the party.. she said no and went and watched tv.. When I walked to wear she was feeling like it wasn't worth a fight as long as she is happy I'll deal with it.. She was sitting out there crying her eyes out.. not a fight just crying big fat tears to herself... when I asked her what was wrong.. she said "you think I'm ugly" ~sigh~ I explained to her that is not what I was saying at all.. she was pretty no matter what I tried to explain that I just thought for a party she might want to get more dolled up.. She wasn't in an episode of any state just sad.. and not wanting to wear normal cloths for the way the weather was.. She stopped crying but stayed sad and pouting till I got her to the party..(oh minus coat, sweeter or anything to keep her warm because those things Hurt, so just shorts and a tank top in 45 degree weather thankfully party was moved from a park to there house due to the weather) Once at the party she was smiling and happy and took off running with her friends.. though I did get alot of weird looks from the adults who were there(not the friends mom because she knows what is going on, but the little girls aunts were looking at her and then at me like I had lost my mind for letting her dress like that when it was so cold out) by far not the worse afternoon in the world.. but still stressful enough..
This evening there was no trouble at all.. it was a peaceful evening.. well as peaceful as it can be with 5 teenagers hanging out at our place.. Sweet Pea did cry a tiny bit when I wouldn't let her run around in the yard with the teenagers after it was dark and cold outside, but I count that as normal younger child wanting to do what the older one is doing and nothing more..

Friday May 7,2010

Friday
May 7, 2010
NO issues at all today..
spent the night with great grandma last night went to sleep fine.
went to school this morning no trouble.
played outside with friend perfectly fine after school
Went and spent the night at her friend T's house this evening.. she went at 6pm it is now 10pm and all seems well. I did explain to T's mom that she had to have her A/B at 8:30pm and then again at 8:30am and I sent the yogurt over also since the A/B hurts her stomach so she eats the yogurt then takes the A/B..

Thursday May 6,2010

Thursday
May 6, 2010... All morning long was a great day.. Got dressed no fighting was happy to go to school...Was excited and looking forward to Gymnastics except for putting on the leotard So I just told her she didn't have to she could just wear shorts..
ONLY... after school her little pinkie on her left had was swollen up like a balloon and all black and blue and purple and hurting her.. While at recess today she was doing back bends and slipped and feel on it.. the school iced it but didn't call me.. It looked really bad so after school I took her in for an Xray.. the ER was busy and it took a good long time in there.. Thankfully it wasn't broken.. but they needed her to wear a splint.. The whole two hours in the ER she was great no crying no nothing just my normal happy child. Maybe a little too happy. she was smiling and laughing she told me it was to be brave because of the pain.. But she was in control..
All of that came to an end when the nurse came with the little blue Popsicle sort of splint... the splint wasn't the issue but when they taped it tightly around her finger she got a panicked look on her face and I could almost watch the change go on in her eyes.. she 1st just started tugging at the tape.. but then she was in total panic mold like the look on her face was like someone was out to get her to do her harm and she was crying that she had to get it off now.. right now..
I should have listen to her and took it off right then.. but I was worried about what they ER people would think seeing how they just put it on and told us she needed to wear it for the next week and follow up with her doctor.. but Sweet Pea almost seemed lost I couldn't reason with her to just wait till we were out of the hospital then I would take it off.. she was crying and crying and crying.. The nurse came back and I did a little explaining of what was going on.. and she just said.. "Oh well Don't take it off" directed towards Sweet Pea then said to me "She has to keep it on"
I Didn't really know what was worse taking it off and chancing her injuring the finger worse or letting her get fully worked up.. Her Doctors office is right across the street from where we were.. So I called But Dr T. was not in.. they were going to have me just talk to another doctor.. I said .. I would just stop by. Once there in the room the nurse let her take it off and we worked on getting her calmed down.. took about 15 minutes(which isn't a long time given that the last time she acted like that took over 3 hours) We managed this by 1) taking the tape off her and removing the splint and 2) distracting her.. I started asking her questions about the boarder in the office.. stuff like how many tennis balls were on the boarder so even while she was crying uncontrollably she was counting in her head and told me 30.. I said lets stand up walk around the room counting them.. She started getting better by the time we counted all 30 of them.. Yes she was right there was 30.. she was out of the episode.. talking normal saying that the tape hurt her finger and she doesn't want to have to put the splint back on..
The Doctor before coming in called over to the hospital to talk to the ER doc we saw to see how bad the finger injury was and then she came in.. and even though Sweet Pea couldn't bend her finger the way she wanted her to.. Dr M.. made up her mind that it was better not to put the splint back on her..
Since then We have had no issues at all.. And Sweet Pea has took her sports prewrap and put the splint back on wrapping it herself with the prewrap.. which doesn't seem to bug her like the tape did..
~sigh~ my nerves are pretty much shot on this and I just want to sit down and cry.

What is going on with Sweet Pea.

For the last 15 months there has been some sort of change in Sweet Pea.. Right around the same time she caught Mono last Jan/Feb... things have been bugging her.. Stuff like blankets touching her, socks and clothing.. she says they are too tight even when they are clearly not.. I didn't think anything of it at 1st because she was extremely sick at the onset of this.. we are talking 103.5 fever for weeks.. The fever 1st started on Jan 9, 2009 and then went away, came back on the 19th and then went away.. Came back on Jan 24, 2009 and never went away.. she was in an out of the doctors though out this time.. and on Feb 3, 2009 the mono test came back saying she had mono and she was sick for a very long time after that.. I'm talking the sickest I have ever seen any of my children.. I don't remember all the dates but around this same time she also tested positive for strep throat which in the grand scream of things seem like nothing given how sick the mono was making her.. she ended up missing over 30 days of school and sleeping all day long, even after getting back to school she would come home just totally worn down..
She still to this point has not got back to the child she was before getting sick energy wise and in other ways.. Such as she seems to be much more clingy at times and this whole cloths and stuff hurting her thing.
For a good long time I over looked it, marked it up to her not feeling well, and then I thought maybe it just became a habit for her to think they hurt her.. It got to the point where it seemed like we would have ups and downs.. sometimes she didn't complain at all and she was perfectly happy with her cloths.. then boom out of nowhere they would all be hurting her again.. she would fight and cry trying to explain to me how much it hurt her and how tight they were and I would battle back no they aren't.. your going to wear them.. she would listen but pull at them crying and crying and trying to tug at them to make them bigger.. It all just seemed crazy to me..
I tried yelling, punishing, even bribing her... nothing seemed to work..
We all sort of marked it up to something that was brought on by the Mono well the Epstein Barr virus that will forever remain part of her..
But the weird thing about this was sometimes she would be ok then out of the blue boom it would all start up again..
Sometime around November 2009 and December 2009 things started to get worse and worse and worse.. they would start to get better and then get worse again..
In March it got to the point I felt I needed to see a doctor since this wasn't going away.
So at the end of March 2010 right before Easter I took her in.. Doctor told me it has nothing to do with the Mono and that he thought she needed a Psychiatrist. They were going to get a referral going for that.. I never really bought into that... I was thinking some sort of sensory problem which was brought on by the Mono or from how sick she was the last year. The Doctor was thinking it was some sort of OCD or conversion disorder.. I never really could buy into that because she had be perfectly fine up until she got really really sick in January/February 2009.. Sure she has always been a shy child.. but she seemed to have out grown that alot to the point of being sort of out going a leader of her friends always wanting them over for sleep overs or her going to there house.. UNTIL she got sick then she went though two different times where she didn't want to leave my side.. One was shortly after she got sick and then she started staying with friends again.. until June 2009 when she went though a phase I couldn't understand.. She was totally afraid to be out after dark.. even if I was with her.. if it got dark out she wanted to be in the house sitting right next to me and we couldn't even have the windows open.. it was weird.. and while she wanted to go to her friends houses though the day.. she didn't want to spend the night.. This went on for about 3 or 4 months.. but now she is back to being perfectly happy spending the night places and seeing it dark outside.. but this clothing thing has got really really bad.

We went to TN over spring break and everything seem to be doing alot better.. no issues with cloths no melt downs or anything like that..
Then two weeks ago it all started happening again.. only worse.. so much worse.. Normally if I just let her wear what she thought fit(normally 2 to 3 sizes too big) the world was happy for her.. but with this last onset of it she couldn't even get comfy naked.. hugs hurt her, laying naked in bed hurt her the sheets hurt the pillows hurt leaning back on the couch or chair hurt..
We were up all night with her listening to her cry and cry and crying sitting up arms wrapped around her knees in the middle of the bed or floor because everything was hurting her..
The 1st night this happened I called the doctor and demanded that they get me the script to see OT at the hospital for sensory issues.. and he asked about the Psychiatrist I told him no one got back to me about it.. I told him I'm willing to take her if he is willing to let us try OT also..So he said fine.. She got placed on the waiting list at the hospital for OT.. and he got on the ball about the Psychiatrist.. turns out there is waiting list for them also.. So they want you to go though counsellors and if they think you need the Psychiatrist then they will put you in with one.. but we got the ball rolling with the Counselling people.. This was all done on April 21, 2010
During the next few days she had issues every morning and every evening.. most of the time I could get her to sleep and off to school... But on Tuesday April 27,2010 things were so bad I couldn't get her to stop crying and having a major melt down about the cloths.. that she ended up not going to school that day.. Tuesday night was awful also.. she couldn't get comfy no matter what.. she just cried and cried and cried that everything was killing her and why is this happening.. But Wednesday morning I let her put on one of the two shirts that have never hurt her when wearing and she went to school in baggie shorts and this silky tank top even though it was only in the 60's. But Wednesday night she came home with a high fever again.. Wednesday e didn't have trouble with sleeping because the fever had knocked her out.. So we all got a good night sleep..
Thursday I called up the school to tell them she wouldn't be in and they told me they have strep running though the school so I might want to get her tested so I called the doctor and got an appointment.
30 minutes before the appointment I had her get dressed which started a major episode.. she cried and bagged to take her shirt off and wear the tank but it was so dirty and the minute she took it off I placed it into cold water.. so she couldn't wear it.. and we couldn't find the other shirt like that just in a different color.. so she had to wear something different.. and it was hurting her .. she cried and cried and screamed and yelled and was pulling and tugging on the shirt.. not only at home but the whole trip to the doctors, in the office, during the visit.. everyone thought I was bring her in because she was hurt.. I had to tell both the nurse and the doctor we saw that day(her doctor wasn't in) that no.. but I am seeing her doctor for this but she is in today because of fever and sore throat.. It took 4 of us to hold her down pry open her mouth to get the strep test.. sure enough it came back positive for strep...
Sweet Pea continued to scream "It's killing me" and "I can't take this" all the while biting at tearing and ripping at her shirt.. even after the appointment was over.. while walking to the car in the middle of the parking lot she ripped her shirt off over her head.. I said to her that people were going to see her and she blurted out in a scream that didn't even sound like her "I DON"T CARE" once in the car I gave her my sweeter to cover over herself and she continued to cry on the way home and while getting her perscription for amoxicillin.
30 minutes after the A/B was in her all the crying stopped.. and she was back to a happy little girl.. she still didn't want to wear a shirt for the rest of the day just stayed hidden under a blanket.. The next morning she woke up and seemed like my little Sweet Pea again.. wore normal(well normal for her cloths) didn't complain about them hurting her or anything...
That 1st dose of antibiotics was on April 29,2010 and we haven't had any issues like that day since.. No crying at night or in the morning ..beyond the normal her thinking cloths are too tight.. but she can find something she is happy with she isn't hurting just being in her own skin anymore.
ON Friday April 30,2010 she had an allergic reaction to the amoxicillin so on Saturday May 1, 2010 they changed her to Duricef and are now saying she is allergic to penicillin.
That Friday night though when I called the after hours line to explain the rash to the doctor.. It was her Doctor(Dr. T.) who was on call... He talked with me for close to an hour on the phone.. Doctors just don't do that..
I guess after we left the office on Thursday the doctor we saw called Dr T. to explain what was going on with Sweet Pea how she was acting and everything(because I told them that I have Told Dr T about this but he has never saw it).. They also told DrT. that she has strep throat..

This got Dr T. thinking and researching and he said he thinks he knows what is going on with Sweet Pea.. It is something called PANDAS. He said "you said all of this started around the time she got the Mono, well right around that same time she also had strep throat" and then he pointed out that the times I have mentioned to him the clothing issue and the clingy-ness and fear of the dark and all... Were all right around other times she had been sick with strep and or ear infections(that could have been strep also but once they saw the ears were bad they didn't test for strep) The explained to me what PANDAS is and what it does..
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PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.

The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep. throat infection.

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We have to do a few different things for treatment for this.. one is still see the councillor because Dr T says he really does need the Psychiatrist and maybe a neurologist help with this.. and medically.. we need to keep Sweet Pea from getting anymore strep infections.. which isn't going to be easy.. But with each on set of Strep more antibodies are being made and those antibodies attack her brain and each time it gets worse.. meaning if she get sick again there is a chance her brain may not recover 100% or that she could be left permanently in that state. WE CAN NOT let that happen.. So we are doing prophylactic antibiotics with her, she will be taking the antibiotics everyday. in hopes that it will keep her from not getting sick..

this is the first step and where we are at treating this at this time... We saw Dr T and talked about all of this with him and what it all meant this past Tuesday May 4,2010

She goes to see the councillor on May 17, 2010 and we go back to see her doctor on May 24, 2010
and the OT at the hospital called yesterday and they can't see her till July 1,2010.. by then I should have a better understanding if she will even need to go that route or not..

In the mean time I'm going to be keeping a journal of how things are going to help get a better Idea of all of this..

BUT most importantly.. Sweet Pea's needs your prayers.. So please add her to your prayer list..

I will keep you all posted..

New Blog..

I'm starting this new blog as sort of a journal of the day to day happening of our little girl Sweet Pea.
Sweet Pea is our 3rd child out of 4 and is our 2nd girl, with and older sister Princess, an older brother Mr Man and a younger brother Little Man.
She turned 8 years old on January 29,2010 and is just finishing up her second grade year in school.. She is a straight A student with some really good friends.. She never gets in trouble at school or at home.. I hardly ever have to correct her for doing anything wrong.. She is in gymnastics and plays both on a fast pitch travel softball team and a slow pitch rec league team.. she will be starting soccer in the fall also.. She is also big time into her Awana's program and has just finished up her 5th year at that memorising every verse in her book each and every year.
But about a year ago we saw a change in Sweet Pea and this is when we will Start this Journey