Thursday, November 18, 2010

Symptoms have not let up.

Sweet Pea is still having a world of symptoms. Eating issues, sleeping issues, mood issues, fear issues.. It's making her day to day life hard on everyone. But if it is hard on us around her, how much harder does it have to be for my poor little baby girl.
She isn't eating, well hardly anything, Chicken noodle soup and spaghetti-O's is about it for the last week.. but I don't mind making Spaghetti-o's at 8am if it means she is eating something for breakfast. Yesterday for lunch she took maybe 3 bits of her food and that was it. We had went to a buffet for lunch and she got all excited seeing the different types of food, ONLY after she got it on her plate and she took a bit of things she no longer wanted it for a number of different reasons.. It was too hard, or the texture in her mouth didn't feel right.. and we pretty much lot her at eating anything more when the breading came off the shrimp and she saw the red vain lines.. that pretty much sent her over the edge as far as even trying to eat anything more yesterday afternoon. She did however have a bowl of chili for dinner with no problem at all.

Sleeping is getting bad again.. well I should say bedtime is bad.. She doesn't want to leave my side at bedtime.. She is crying and crying and crying every single night. I can't put her in bed and then go to the bathroom to brush my teeth or anything.. she just flips out when I do.. Last night I got all the kids in bed except for Sweet Pea and we were sleeping in the living room again.(though she is happy to go to bed in my room, but DH and I are taking turns he takes the couch one night while sweet pea and I get the bed then next we take the couches and he gets the bed) Like I was saying everyone was in bed and DH was asleep, I told Sweet Pea to go lay down on the couch and I will be there soon, I just needed to take my contacts out.. and that sent her into a world of crying about why do I hate her.. I never do anything for her, I know she can't be in a room alone and I should have taken my contacts out before so she wouldn't have to be alone.. She ended up in the bathroom with me while I took them out, The boys bedroom is right next to the bathroom and I saw Little Man was not covered up(this was after I took my contacts out and we were on our way back to the living room) So while Sweet Pea walked into the living room I detoured into the boys room covered Little Man up and then I heard a blood curdling scream from the living room and next thing you know Sweet Pea was at my side mad, scared and screaming at me for leaving her.. I said I was just covering up your brother I was on my way.. She went on and on again how I must hate her and I didn't tell her I was going to do that..
Ya know i try to keep my cool with her, because I know when she is like this it's not really her in control but what is happening to her leaving her pretty much not able to control what she is doing.. but I didn't keep my cool very well at that point... and looked at her and said "honey I don't have to tell you or get your permission when I need to go to the bathroom or if I"m stepping into another room for a minute" She yelled in a voice that I haven't' heard since this spring in the mist of the worst of the PANDAS "YES YOU DO"....
When I heard that voice the same voice I heard back on April 29, 2010 when she was ripping the shirt off her back in the middle of the doctors parking lot.. That there was no reasoning with her at all at that point..
So I just went to the couch with her, hugged her and we prayed together.. and then she cried herself to sleep in my arms...

Her mood is like a swing, back and forth and back and forth.. one minute she is perfectly fine, the next she is crying or yelling at someone for something.. you can be sitting here talking and playing with her and the next she is storming off crying and sad and nothing has happened to make her that way.

Yesterday we were back at the dentist with her because Monday night a filling that was just done last week had fallen out. So we were back at the dentist..
She was soooooooooooooo good and soooooooooooo brave.. she sat in the chair look of terror on her face and her body shaking with fear but she let them refill it with no trouble..
Then we went to lunch I already mentioned about how she ate.. but there was more what I think were symptoms going on at lunch.. She really wanted to go to this McDonald's in that area with this super huge playground.. but my mom and I didn't really feel like eating McDonald's.. if she would have had a melt down over it I'm sure we would have gone, but she was happy to eat where we wanted and then we would take her afterwards to play.. We went to a Buffet and we left her pick where she wanted to sit.. She picked a section with no one in it, so we went in.. she picked at her food and maybe at three bits, and then an ice cream cone(well part of one).. but around the time she was eating ice cream.. a group of 4 or 5 older grey haired people came in.. sat in the same section we were in and was talking at very low normal for a restaurant voices.. Sweet Pea sort of kept covering her ears.. and then she said almost in a cry but not crying.. "can we leave please they are talking way to loud and it is hurting my head"
They were not talking loud it was not loud at all, but we just said ok and we left.. We drove the way to the McDonald's.. As I was looking for a place to park, she stared crying in the back of the van.. "just go home, just go home, there are too many people in there" There were people but it wasn't crowded.. She was too afraid the amount of kids in the play land was going to hurt her ears and head. For an hour and a half before this she had done nothing but look forward to getting to play there, and now here she was begging me to just take her home because of how the noise hurt her head from the older folks and she was scared about how many kids were there. She cried till she fell asleep on the hour trip home..
When we got home she cried that she didn't want to get out of the van.. but then things got a better.. she did ok for most the night.. with a bit of yelling at everyone not to make noise(even though we weren't) She had a few not melt down but storming off and yelling at us about the noise.. and then came the bedtime story I mention

Sometime though the night she left me in the living room and she climbed into bed with daddy.. I woke up alone, well not alone because Little Man sometime though the night left his room and joined me on the couch.. I woke up because I couldn't feel my arm which he was sleeping on.. I slid off the couch when it was time for DH to go to work left Little Man stay there and I joined Sweet Pea in my bed for the next few hours..

This morning Sweet Pea woke up.. ate spaghetti-o's for breakfast, picked her cloths out and then started telling me "mommy I'm really dizzy and my head hurts really bad" I got her Motrin.. and her antibiotic she took it then laid in bed crying till 5 mins before we had to leave when she had a melt down about her not going to school because of how bad her head hurt.. I told her that was fine she didn't have to go to school but that I had to take Princess to her dentist appt and she would have to come with us.. As I was walking out the door to get the boys to school Sweet Pea still crying and carrying on grabbed her coat and book bag and pounded her way crying into the van Yelling "FINE I"LL GO" We got to the school to drop her off and she had another yelling fit about her hair not being combed(that was because she wouldn't let me and she wouldn't brush it because of her head hurting) thankfully I had a brush in the van she grabbed it and started ripping though her hair with it.. The whole time Mr Man(my 5th grader who is at the 5th and 6th grade building)is asking her to please get out of the van so he isn't late to his school which is making her cry and yell at him.. and Little Man(the kindergartner) is standing outside the van saying "come on we are going to be late" which is making her yell at him also..
She screams "FINE" jumps out of the van still crying and goes into the school still crying ... Which is a first for her and me.. We have been dealing with PANDAS for pushing 2 years..(only knew what it was since May 2010) And this is the very 1st time she walked into school where she didn't have it pulled together before getting out of the van..
I haven't emailed her teacher yet.. but I'm very interested in seeing how she did though the day.. No one has called me so I guess that is a plus.

That is my latest update on how things are going here..

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