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 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..