Wednesday, November 24, 2010
The Immunobiology of Tourett's disorder Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus&Related Disorders A Way Forward
Now we need Science to do there part to help these children.
Friday, November 19, 2010
(4) Presence and/or history of certain characteristic physical signs and symptoms. Adventitious movements have been identified in 31% of patients.
Wide pupils (patient appears "terror stricken"; present 83% of patients).
Various and evolving tics (present in 72% of patients).
Deterioration in fine motor skills and handwriting (dysgraphia)(89% of patients).
Short-memory loss (62% of patients).
Enuresis and/or urinary frequency (88% of patients).
Increased sensory responses (increased sensitivity to light, and/or sound, and/or touch, and/or smell) reported in 39% of all patients.
Non-specific gastro-intestinal complaints commonly reported.
I knew when Sweet Pea was going though the worst of this last year that she just looked different.. I couldn't explain to anyone what made her look different. I always said it was her eyes but I wasn't sure why.. I thought it was just sort of like the light that use to be in her eyes were gone..
Then she got her school pictures back from this year and I knew what it was it was the pupil dilation the wide pupil that Dr K mentioned at his website.
Here take a look.
Sweet Pea 1st grade before the onset of PANDAS. I believe the onset of PANDAS was late January early Feb 2009 this was Oct 2008 (but she could have been having milder PANDAS stuff before then that I just didn't know about guess we will never really know)
Sweet Pea 2nd grade in the mist of PANDAS before we knew what it was Oct 2009 I remember this day well she had a melt down before school because at the time she was wearing my teenagers cloths because she was saying everything was too tight and hurting her.. She also was fighting me on baths and washing her hair.. so she and I had a big fight that day about her wearing the shirt i bought her for pictures and also her letting me add some curls to her hair.. I won the battle but now wish I knew what was going on and that I wouldn't have battled with her over it and just would have let her been.
Sweet Pea 3rd grade Oct 2010 we found out about PANDAS and started treatment in May 2010
Now a closer look at her eyes
Look at the difference in the size of her pupils after she started the treatment for PANDAS.. I can go back to all the pictures I took of her last year(and I take Alot of pictures.. I'm a little camera happy LOL) and all of the pictures I have of her look the same with the wide pupils. I shared these pictures with other parents of PANDAS children.. and this is what one of the mothers wrote back to me.
What an amazing album you've created here. When you zoom in on the eyes, well, it is really something, the change in the final picture after treatment has begun. Keep this. I wish there were researchers or doctors we could send this to so that they could understand. Such physiologic change for something that so many docs say is "in their head". HA! A child can not think their pupils into dilation. The medical complexity of PANDAS is mindboggling to me.
Thank you for sharing this,
I plan to keep it in my stuff if you don't mind.
This got me thinking.. Why not send it to some of the doctors.. Don't know if they can do anything with it.. but what can it hurt to send.. So I think I'm going to start with sending this to her pediatrician With a note of Thanks for being willing to call this PANDAS even when he knew he would take alot of slack from it from others in the medical field.. and Thank him for treating her and for giving me my bright eyed little girl back.
Thursday, November 18, 2010
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..
Saturday, November 13, 2010
Still really busy so I'm going to cheat in my update.
I belong to a PANDAS email support group.. So though out this dentist stuff with Sweet Pea I have been updating the group. So I'm just going to copy and paste what I have been writing here, just changing the names to the kids blog names.
Here was the 1st update after the surgery on Tuesday.
I'll let ya know later if I'm seeing PANDAS flare up or not.. right now I can't
tell if it's normal crying and freaking out what would be expected from a 8 year
old who did not want to have this done and now has her whole mouth in pain, plus two injection sites at her arm which is hurting her and her stomach is upset because she is refusing to eat or drink anything yet I forced her antibiotic in her which normally gets upsets her stomach when taken on an empty belly. Right at the moment.. she seems fine but from the time she woke up at 1:30pm she has done nothing but cry off and on, more on then off, with alot of screaming at the top of her lungs about why did I do this to her and how bad her mouth hurts and how her arms hurts and how her head feels dizzy(from being put under) and just alot of laying in bed crying..
Was this normal waking up being sore and in pain stuff maybe.. Seeing how she isn't doing it now, she is still in bed but now has a Popsicle she is sucking on
and while she seems mad and snippy she isn't crying.. She only had a tiny melt down at the office before hand she started crying in the waiting room saying she wasn't going to have it done, she didn't want to be put to sleep she didn't want any IV's she didn't want a shot, That little crying turned into her running into the bathroom and locking herself in, Thankfully I thought about that before hand and I ran in after her so she locked us both in and it took me 15 mins of her screaming and crying about how much I must hate her to do this to her.. before I was able to get her to agree to come out of the bathroom then the person before her was running over so her 10:30am start time went till 11:30am which left her sitting in the waiting room thinking about it, which was NOT a good thing.. She cried that whole hour.. hiding curled up in a corner with her coat over her head... Once back there we had two game plans one was put her under by IV but if she wasn't taking part in that he was going to give her a quick shot to knock her out.. I knew before they even called her back it was going to be the shot.. so I held her on my lap she was flatly refusing to take off her coat so while I held her arms and upper body the dentist held her legs and the other guy pulled her coat down over her shoulder and gave her the shot. with in mins she was out..
Everything went well dental wise. she had 11 teeth worked on including 3 big cavities, one crown and a tooth pulled, she also lost a loose tooth while they were doing the work.
Now I wait and see what affect this has on her PANDAS wise.. I would be tempted to say all this crying is symptoms, but then I think it is also very normal to be afraid before being put to sleep and having dental work.. and over reacting might have become her norm since all this started I just don't really know.. Tomorrow either she will be over all the fair and pain and be back to herself.. or she could be worse and then I'll know what is going on.(I think LOL)
Just wanted to give you all an update.
This was written around 5pm on Tuesday Nov 10,2010
everyone was responding that they glad things went well and that she didn't seem to end up with symptoms.. My next update to them was this. It was written at around 7pm on Nov 10,2010
Thanks guys since I wrote last.. She has improved greatly.. She is now pleasant, sitting on the couch showing her little brother all the new stickers the dentist gave her, She ate some soft mac and cheese and she seems happy.. So at the moment all is going really well... I honestly didn't get my hopes up to see my sweet little girl today.. but at this moment she is herself. Thank you Lord..
one moment at a time is all i can ask.. praying she goes to bed as happy and wakes this way also.
My next update wasn't until 11:55PM on Nov 11,2010
here it is
Well she went to bed last night happy, just in pain and for some new reason she
is refusing Motrin.. I mean if I want to battle her and force it down her I
think I could I mean I'm still bigger then she is LOL.. But I figured if the
pain got that bad she knew I had Tylenol or Motrin that could help.. but she
would just cover her mouth and start crying No no no no every time I offered..
So she cried a bit here and there about pain last night.. but she slept
She seemed to have woke up happy this morning.. but about 9am I think it was
more PANDAS crying then pain crying at that point..
She didn't go to school because she still wasn't feeling well and still
couldn't really eat anything and was still in pain.. But she spent most of the day today crying.. at 1st I was thinking she was just hurting and that might have been some of it.. But when it got dark tonight her fear of the dark was back. I had to make sure every window was covered where she couldn't see the dark..
I had to go to the school for parent teacher conf. this evening at 6pm my
husband doesn't get home till 6:15 6:20pm from work.. So my 15 year old was
going to watch the younger 3 kids for a few mins. until my husband got home..
Sweet Pea was not having any part of that she was crying and crying... but then
was able to tell me she was just to scared to stay home with Princes(my oldest)
She said "I need an adult" At that point I knew it was symptoms she just doesn't get scared like that normally and she also loves when Princess is the babysitter..
I explained to her that daddy would be home very shortly after I left.. but the
look of fear that was in her eyes I knew it was pointless and I couldn't leave
her with Princess.. 1st off it wasn't fair to her and 2nd not fair to Aubrie to have
to have her deal with Sweet Pea so scared out of her mind.. So I was almost late
to the meetings because I called grandma and took sweet Pea over to grandmas house where she would feel safe. When i picked her up and drove her home.. she was so scared in the van looking out at the dark.. she wasn't crying but she looked so afraid sitting in the front seat next to me with her knees pulled up to her chest.. So I asked her if she was ok, she said no not really but I'm trying hard mommy. At home she followed me from room to room and tonight she wouldn't go to sleep in a bedroom be it mine or hers.. She wanted to sleep in the living room but not on the couch she wanted to lay on a blanket on the floor next to the couch.. and then I had to lay right on the ground with her with my arms wrapped around her at one point my 5 year old started yelling for me from his bed so I got up to see what he needed and Sweet Pea just cried and cried and cried the whole time I was gone, not just a normal cry but the freaked out sort of uncontrollable crying.. I was only gone no more then 3 mins, 5 year old only wanted me to cover him up and kiss him goodnight. Then I laid down with her again this time she wrapped her arms around me as so I wouldn't leave again.. and she continued to cry for about 40 more mins just because I left her for 3 mins. the bad thing was I had to pee really bad but knew if I moved she would start this freaked out crying all over again.. I held on till I couldn't any more then explained to her that mommy had to go to the bathroom.. she got all upset and started crying even harder she didn't follow me to the bathroom but went into full melt down crying hiding under a blanket while I was gone which wasn't very long at all.. instead of going to lay back with her I went right for the
Motrin.. had to fight with her but got it down her.. then I held her in my arms
laying on the hard floor in the living room.. for about 20 mins of her crying more when she stopped.. she rolled out of my arms said, good night mom and fell asleep.
I'm going to just sleep on the couch out in the living room tonight because I
have no idea what she might be like if she wakes up in the middle of the night..
but at least she is asleep now..
On Friday Nov 12, 2010
She woke up happy, went to school came home happy, went and played at grandma's then came home and her friend called asking her to spend the night and she wanted to..So she did, No one called me through the night and she is still at her friends house. They just called me asking if she could go to a baby shower with them.. She sounded all excited about going and sounded fine on the phone.. So she must be doing ok at the moment.
That is where we are at for now..
Monday, November 8, 2010
This was the 1st post covering Oct 17-24,2010
Oct 24 was a Sunday night and when I notices that red gum with the puss in it.
Oct 25th I emailed her doctor letting him know she had symptoms all weekend and that I found that infection in her gums. He had the office call me and bought her in to be seen on Oct 26th.,
Oct 26, at the office he confirmed it was an abscessed and he had us go to the hospital for more blood work. He also raised her antibiotic from 250mg twice a day to 500mg twice a day.
Oct 27 I called her new dentist.. who didn't want any part in this with her immune disorder
Oct 28 her old dentist agreed to see her but wanted her in to take a look the old dentist being a pediatric dentist who is an hour away from our house and does not except the kids secondary insurance. They are going to put her under and do the work every bit of work that needs done all at once.
this bring me to the post I wrote on Oct 29th, which was a bad day for Sweet pea. Here is that post.
Now getting caught up more..
she has been having symptoms every day since.. Not bad enough to keep her out of school, but often I wonder what is the point of sending her when it is a symptom day.. It is so hard for her to focus and I don't know how much of what is being taught is sinking in on those days.
My straight A student brought home an F on a paper last week... This is the girl who up until this point never had anything lower then a A on anything.
I have saw a drop in her graded papers on every single day I send her to school while she is having symptoms.
Her report card came home Friday(Nov 5, 2010)
It was the worst report card she has ever had.. Her normal all A+ was down to mostly A and then a B and a B-
I know this is still a good report card.. but It's NOT HER...
I can't even say to her you need to try harder because it's not that she isn't trying.. on a good non symptom day this wouldn't even be a problem when her brain is able to work at it's peak she could do all her work without effort.
She is in a gifted reading program because of what an above average reader she is and has been all along.. ONLY it was reading she got the B in(not the gifted reading but just her normal reading) The gifted program she hasn't been graded on.. But we have some issues to report with it..
She had those two good weeks symptom free at that time in her gifted reading they read 9 to 10 chapters in a book a week, do a question and answer paper on it and write about it.. Those two weeks of No symptoms she whipped those 9 chapters out in one night, could answer every question when she was done, and had no trouble at all writing about what she read in detail.
Since then with the PANDAS symptoms back.. She struggles to read 9 pages at a time and then after reading just those few pages she can't remember what she read or answer anything about it..
It's like she is just reading words and none of it is clicking with her at all..
The other night she was so upset by this that after trying to read the same page over and over just so that the words she was reading had any meaning.. she took the book and threw it across the room and started crying her eyes out.
She feels so lost and I feel lost because I don't know what to do to help her.
I need to some how let her teachers know about this.. but then what do I say.. Yes I see it happening and I can show them in her graded papers and such when it is happening.. But what can we do about it?? I mean like right now the last 17 days have all been symptom days.. So her school work is not up to par at all. but it's not like she can just not do it.. I don't think they will buy into me saying don't grade her until she is back to non symptom days when we don't even know when that will be..
Everyone, doctors and parents of PANDAS children are warning me that after her dental work things could get worse because any time they do stuff in the mouth it moves around the strep that hides in the mouth and it can seep into the blood stream. If she is struggling now not just with symptoms messing with her but with it affecting her school work.. what do I do if she gets worse???
I don't have answers just alot of questions..
Please keep Sweet Pea in your prayers
Her Dental surgery is set for This Wed the 10th at 10:20pm They are planning to have her under for about 2 hours with alot of dental work being done at that time...
I'm placing all of this in the Lords hands.. Thanks for your prayers.