This is just so WRONG.

Yesterday on my mindless chatter of a busy mom blog, I posted about a little girl with PANDAS whose family took her to Boston Children's hospital for care, was told PANDAS was not real and then the Hospital called CPS on the parents and the girl is now in state custody..  Today I gave an update with more of the story.  It hit me at that time that I should be posting this over on this blog which is my PANDAS blog.    So here is what I wrote today.

This is just so wrong and makes me sick to think about. :( Here is more news on the story I posted yesterday about the girl with PANDAS taken fro her parents, if you didn't get to read it you can do so HERE ... this is an email I got from on of the PANDAS support groups I'm part of. Beth Maloney is Lawyer for the family, also a PANDAS mother and author of the book Saving Sammy
Here is the email.

For those of you who don't get Beth Maloney's emails, but want to know what you can do to help in the Boston case, this is from Beth. I think these people need national media exposure - NOW. I just cannot fathom that they have to wait 3 weeks for another hearing.

Things are not good with Elizabeth. She remains at Boston Children's Hospital. BCH still refuses to recognize that its "treatment" is a complete failure. She continues to decline. She can no longer walk. She barely speaks. Earlier this evening, I listened to her screaming and wailing in the background from her bed as her brokenhearted father tried to bring me up to date.

There will be a piece in the Boston Globe Magazine about PANDAS within the next three weeks. They contacted me directly as a result of your efforts...someone posted or blogged regarding my earlier emails and that is how the Globe found the story and me. Based on my interview today, which lasted for over an hour, I expect this situation will receive a great deal of attention. Keep posting. Keep blogging. It makes a difference.

I want to be 100% clear that these parents did NOTHING wrong. They took the exact same steps that you or I would have taken to help our children. This could have happened to any one of us. They are living every parent's nightmare...losing custody of their child for trying to do the right thing. And these parents need your help.

The Wrays have given me written permission to share the following information with all of you and the media.

Briefly, Elizabeth was diagnosed with PANDAS by two doctors in NY February 2012. It first showed up as trouble eating. Blood work showed mycoplasma and Lyme. With antibiotic treatment she improved and did well over the summer. But she took a dive in early September. Her parents took her to a hospital near them, but the hospital felt she needed more than it could offer. There were two possibilities suggested: Rochester and Boston Children's. The parents wanted her to go to the first place that had a bed; that was at Boston Children's so she went there. BCH immediately decided that Elizabeth's issues were all psychiatric and not medical, not PANDAS. They have refused to introduce antibiotics. And although she was on a gluten & dairy free diet, BCH immediately introduced both. She has had a spinal tap, EKG, EEG, MRI and many, many other tests. The parents were never given any test results. They were told there were "irregularities" in some tests, but they have not been informed what those irregularities are so they still have no idea. Last Thursday and Friday, the hospital told Jay that Elizabeth was cleared to transfer. He was actively working with Dr. Geller, Dr. Jenike, the OCD Foundation and Rogers Hospital to figure out where would be best for Elizabeth to go. As far as Jay knew, BCH was on board and helping him figure this out. Then on Monday evening at about 5:30 pm he was told to be at Court the next morning when the State would attempt to take custody based on allegations made by BCH. We were in Court Tuesday morning.

The State has been placed in charge of Elizabeth’s care (because it has custody), but the Judge specifically instructed that she may not be moved to the hospital's locked psych unit. I do not fault the Judge for his decision on temporary custody. It's hard to explain in a few sentences... but when a Judge is confronted with the kind of accusations that were leveled against the Wrays, it would have been very difficult for him to simply dismiss the petition (although I tried to get him to do that). He heard me though, and he protected her as much as he felt that he could - given the circumstances - by specifying that she should not be moved pending his final decision. We are scheduled to go back to court on October 23rd. Her parents are in agony knowing that she may suffer for another three weeks at BCH.

Below is the list of the names I was given by the State of those at BCH who spoke with Child Protective Services about having the State of Massachusetts take custody of Elizabeth away from her parents. I have provided as much contact information as possible. Call them. Email them. Make them understand that there are thousands of parents standing behind the Wrays. You may want to begin by sending to this email which is a general for the hospital but I want you to do more http://childrenshospital.org/email.cfm?s=1394&c=7&u=webteam

I want you to call the hospital and ask for these people. I want you to leave voicemails if you don't reach them. They need to know that this movement is only going to grow. Will you do that for us? The general number at the hospital is 617-355-6000. I want the switchboard jammed. Begin every call with “I’m calling about Elizabeth Wray. Please connect me to ...” I want your voices to be so strong and so many that - maybe - then they’ll begin to get it. I want them to know that parents are not longer going to bring their children to BCH. And I want them to know that they cannot hide behind the cloak of the State.

As far as emails, from the few that I know it appears that the pattern is first.last@childrens.harvard.edu

Here are the specific people I was told that the State spoke with:

Dr. Othman Mohammad

Dr. Simona Bigourno

Dr. Gary Gosselin gary.gosselin@childrens.harvard.edu fax 617-730-0917

Dr. Lydia Shrier 617-355-7181

Elizabeth Holleran, child abuse social worker

Deb Sorentino, child protection team

Ellen Rothstein, Esq. Associate General Counsel Ellen.Rothstein@childrens.harvard.edu

Others to contact would be:

James Mandell, Chief Executive Officer

Sandra Fenwick, President & Chief Operating Officer

Stuart Novick, General Counsel 617-355-4937 Stuart.Novick@childrens.harvard.edu

This is a link to the entire leadership team http://www.childrenshospital.org/about/Site1394/mainpageS1394P4.html

Many of you have asked if you can help with a donation. Jay wants to be clear that he is, "not the type to ask for money," but if you want to help he will gratefully accept. He is the family breadwinner and is presently on medical leave from his job where he has worked for the same employer in customer service for fifteen years. His family home is more than five hours from Boston. His family has living expenses in Boston, a huge liability for all the "co-pays" that will be charged for hospital stay, legal fees, expenses at home to manage, and no end in sight. He asks that checks be made to “Beth Maloney Esq. Trust Account” and indicate "for Elizabeth Wray" on the check. The mailing address is Beth Maloney, Esq., P.O. Box 468, Kennebunkport, ME 04046

I wish I could write more. I am so exhausted that can only imagine how the family feels. I keep picturing Sammy in that hospital bed, unable to walk, screaming as they try to force food down his throat.

Be our voice.

Beth

The Right Thing or Not????

On Tuesday Jan 18,2011 Sweet Pea went back to the Children's Hospital to the immunologist for the results of the immune testing.
I had totally had it in my mind that they were not going to find anything, after talking with alot of PANDAS parents most of the kids did not have any immune issues, just the auto immune response of PANDAS. And they sort of thought of PANDAS as an over active immune system not a immune deficiency. So I had prepared myself to hear that all was well with Sweet Pea.

ONLY that is NOT what they told me.. they said while most of her test came back normal that there was a problem with her IgG. The S Pneumo IgG antibodies numbers were all wrong.. I don't fully understand what all that means..
but the 1st thing they wanted to do to treat it was to give her a booster immune shot of Pneumoccal Polysaccharide(PPSV). The part that raised the big red flag for me was the S part of all of this.. S= Strep.
I questioned the doctor if this was the right thing to do, seeing how she has PANDAS and it's strep antibodies that attack her brain.
She told me that She said Dysregulation of the immune system can result in autoimmune responses(which PANDAS is) Her hopes are that they introduce her body to this again and it kicks her immune system in gear and that her body will start remembering and creating the right sort of antibodies to fight the right thing. This booster shot is the 1st step.

I went ahead an let them give it to her, even though i am still questioning myself on if it was the right thing to do.. seeing how they were putting strep into her body.. UGH UGH UGH..
She was already having milder symptoms from when we all had the strep throats in the house.. and now she has a live virus running though her... Her symptom are ramped up at the moment.. We are doing alot of Motrin to keep the inflammation down and that helps a bit.. but the symptoms are in a flare right now.
Also it doesn't help that we have just lowered her antibiotic back to a prophylactic state. of 250 mg twice a day over the 500 mg twice a day.

Anyways we will have another lab done after Feb 15,2010 to see if her body is remembering the antibodies and if she can create the right ones.
If she does I do not know what that means as far as the PANDAS goes.. but as far as her immune system goes it means that they will then just keep an eye on it to make sure it keeps working correctly ... and if it does it should mean she stop catching everything under the sun.
Basically the IgG are one of main antibodies in the immune system. I'm just going to explain it as I understand it..
Once your body has been exposed to something the body builds antibodies to fight the infection, virus, whatever.. the IgA antibodies fight off the infection once you get sick, but the IgG antibodies are made and are to remember what it was they were made to fight against, So that when you are exposed a 2nd time to it as soon as they see that virus,bacteria whatever in your system they are sent out to kill it quickly before you become sick and also trigger the right sort of antibodies to be made to kill off whatever it was you have been exposed to.
In Sweet Pea's case, the IgG's are messed up, and are not creating the antibodies , which in return her body doesn't remember she has had this or that infection before so she keeps getting sick with the same thing over and over again, which explains all the time she gets strep, ear infections and flu's and viruses and pretty much anything under the sun because the S Pneumo IgG antibodies are to fight off like 23 or 28(i don't remember) or so different types of bacteria including those most likely to cause serious disease.

So like i was saying I don't know what it means if her body starts to respond correctly with this booster shot. I think they just watch her and maybe give her a booster every 5 years.. and I'm not 100% sure if this will help with the PANDAS autoimmune disorder or not.. but in my mind it makes sense that if the immune system starts working correctly that there is a good chance that the mix up with the antibodies fighting the wrong things will stop also (but no one has come right out and said that)..

On the other hand.....
If this shot does not fix the IgG problem and when they do the test again if the test still shows that her body isn't doing what it should, Then they will label Sweet Pea as having an immune deficiency which most people would NOT want... but I don't know which way to hope this goes...
Because treatment for immune deficiency is IVIG(click HERE if you would like to know what IVIG is)
IVIG is also one of the best treatment for PANDAS... ONLY for PANDAS it is not covered by insurance because they consider it experimental. IVIG itself is extremely expensive. I have not looked into IVIG with Sweet Pea yet because there are other treatments that have worked and I sort of took the approach of start with the less invasive and if it doesn't work work up to the big guns.. Though there are some doctors out there who are PANDAS experts that don't bother messing with antibiotic or steroid treatments and goes right to IVIG.. I have emailed both kinds of PANDAS doctors. Dr T. in NJ starts small and works his way up. Dr K in IL goes right to IVIG.
In any case.. if they label Sweet Pea as being immune deficiency she will be able to get the IVIG all covered by insurance for the immune deficiency and it will treat the PANDAS as well. Everyone I have spoken with who has gone the route of IVIG has had success with it. some of them needed two rounds of IVIG but the PANDAS is gone.

So I ask you all to Pray God's will in this matter... be it that her immune system kicks in and turns the auto immune response of PANDAS around so it stops happening and she can go back to her normal self with the added benefit of not getting sick so often, Or That she labeled with having an immune deficiency and that the treatment for it will also be what heals her from the PANDAS.

Sweet Pea's a Strep detector.

Sunday Little Man & Sweet Pea got sick with a tummy bug.. puking and the other end..
ONLY even while sick Sweet Pea was her sweet normal happy love able little self..
I kept them both home from school Monday just to be on the safe side that they
were well enough to go to school.

Tuesday I sent them both well all 4 of the kids to school.. Tuesday night..
Mr Man was complaining about not feeling well.. Said his belly hurt really bad.. I
figured stomach bug that the younger two had.. but nothing came of it.. as far
as stuff coming out of him..
BUT...........
Sweet Pea was having PANDAS symptoms.. really moody, yelling at everyone crying at
a drop of a hat.. and mostly very hateful anytime her and Mr Man were in a room
together.. In my mind I was thinking.. Dang it the girl went to school and was
exposed to strep.. Shoot..

Wed.. Little Man woke up complain his belly hurt.. but nothing was coming out of him
so I sent him to school(oh also no fever) Mr Man was still complaining an awful
lot about his tummy but no fever and nothing coming out so I sent him to
school.. BUT Princess was sick with the stomach beg stuff and hers was coming out
the bottom end of things.. So she stayed home from school.. while the other 3
went..
Sweet Pea after about an hour of being home was very PANDAS crying, mood swing,
OCD

Today Little Man woke up not looking well at all.. didn't really have a fever per
say but was 99.9, complaining that his belly hurt really really bad, I let him
stay home.. though out the day he kept saying his throat was starting to get
sore, and he felt like he was going to throw up only he never did that and that
his head was killing him.. around 3pm he said his neck was really stiff and
sore.. something clicked in my head that those all could be signs of strep..
even though this whole week I was thinking virus because that is what Rhett and
Sweet Pea had earlier and Princess sort of had it too.
Little Man woke up today saying he didn't feel well but once again I sent him to
school.. he came home from school tugging at his ear and his ear bright red,
complaining that his belly hurt real bad and that his "brain" hurt so i figured
he had a headache..
Picked Princess up from school today... she didn't even know Mr Man was home sick
yet alone what his symptoms were... but as soon as she got in the car she
raddled off a list of things that was still bugging her when I asked how she
felt.. sore throat, stomach pains, neck sore and head killing her..

Sweet Pea came out of school today, skipping, all smiles, no signs of PANDAS
symptoms.. She went right from school to rollerskating, from rollerskating to
gymnastics and when I got her home from gymnastics it was time for me to take
Princess,Mr Man and Little man to the doctors so I picked them off and lefter her with
DH... She wasn't around the other 3 all days long and NO PANDAS symptoms to speak of...

Mr Man, Princess and Little Man all tested Pos for strep tonight.. :-(
Little Man on top of it has an ear infection and Princess on top of it still has the
UTI.

Here I knew Sweet Pea had been exposed to strep due to the symptoms it just didn't
hit me she was being exposed to it at home and not at school..

BUT!!!!!!!!!!!!!! it was thanks to her that I took the other 3 in.. just having
a slight sore throat, and tummy pains never would have had me running them to
the doctors.. I mean there is a bad stomach virus going around here, and they
were not running fevers... It was her having PANDAS symptoms that had me
thinking of different signs of strep and her symptoms was what made me take them
in.. I really thought the doctor might LOL at me bring kids who biggest
complaint really only complaint was that there tummy hurt into the doctors when
they weren't even running fevers...
but they didn't and they tested them for strep and they all test post.

I'm making myself an appt tomorrow cuz I have been having the tummy pains and a
slight sore throat and my head has been killing me also.. and chances are good
with 3 cases of it in the family that I could use an antibiotic also.

Been a few weeks.

It has been a few weeks since I posted last, and I'm happy to report things are getting better.. The PANDAS symptoms are not an every day thing now and when they come it comes only in a mild form of OCD and anxiety and out burst. Nothing too major and nothing that is keeping her from her every day life, friends or school. Bedtimes are no longer bad and neither is getting her up and dressed in the morning.. Normally if we are going to have any issues at all it is right after school in the 1st hour after being home.. which could just be a normal brother and sister thing because it it's all 3 of my younger kids bickering then.. but normally started by Sweet Pea telling everyone to stop talking that the noise is bugging her.. but it's all good, much much better then it was a few weeks ago..

She is still on the 500mg of duricef.. At least until the end of this month when I think the doctor is wanting to lower her dose.

Last week on Dec 7,2010 we had the 1st visit with the child psychiatrist, She listened to everything I had to tell her and also got to talk with Sweet Pea alone.
It was a good day for Sweet Pea a non symptom day.. which was good because it meant that she was willing to go and talk with the doctor. In the end the Psychiatrist agreed that this is PANDAS but also gave her the diagnosis of OCD, She would like to treat with an SSIR Zoloft to which I said no thank you not at this time..
We go back to see her pedi at the end of this month he is not going to be too happy that I turned the Zoloft down again,since he has been pushing for it since Oct..
But I don't think it would help, I feel like it could do more harm then good, and at this point she really doesn't need it..

Every bad flare up of symptoms she has ever had has come on right before we found out she had an infection.. and all her little symptoms I can pin point them to her being around someone who is sick.. I just can't see how Zoloft is going to help that.. If her OCD symptoms were coming outside of her having an infection or being around those who do.. like there was no reason for a PANDAS flare of OCD and yet she was still having alot of OCD I would think strongly about Zoloft I have heard good things about it.. but when antibiotics take he symptoms of PANDAS/OCD away and makes her better.. I don't understand the push for Zoloft except for that is the go to treatment for OCD..

The one thing good that has come out of this though is that the psychiatrist given Sweet Pea's medical history thinks it would be extremely helpful to have immunology testing done on her and see if there is anything going on with her immune system other then PANDAS which leaves her prone to all these viruses and infections. I was to have that testing today at the Akron Children's Hospital but that is a good long drive away from us and we had a big snow storm so it has been pushed back to next week.
I found out that with PANDAS it's the immune system working over time.. that will not show up in the immunology testing.. but they can see if her immune system is low or what not which might explain why she got strep infections, ear infections, Mono, swine flu, viruses and abscesses all the time.. and if we can build up her immune system to stop the infections, that could stop the trigger which produces the antibodies, which attack her brain. So while she is NOT looking forward to this testing.. I'm sort of excited to see if anything is going wrong in there that can be treated.. and yet still hoping nothing is wrong and that all is healthy in there.. it's hard to say which way to pray.. if something is wrong it can be treated, if it's well we are at the same spot we were.. So I"m just praying Gods will be done.

So that is where we are at medical wise at the moment.. But she is doing well for the time being..

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..

Filling in the blanks.

I did this jump from Oct 24th to Oct 29th between my last post about what was going on.. So I wanted to take a few minutes to fill in some blanks and then get all caught up till Nov 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.

The 504 meeting today.

Today was the 504 meeting with the school.. Yesterday I spent the bigger part of the day.. Changing everything I thought i had ready.. With the help of my sister I was able to get my main points across without being so wordy.. If you have read any of my blogs in the past you know I'm very wordy LOL. It looked so much better after we did that.. I don't have time to type it all out to show you tonight.. but maybe one day..
I also changed the sample letter to go home to parents to read
~~~~~~~~~~~~~
Dear Parents
This letter is to inform you of a child in our school that has an auto immune disorder known as PANDAS(Pediatric Autoimmune Neuropsychiatric Disorder Assoc. with Strep)
When a child with PANDAS contracts strep or comes in contact with strep, antibodies that are aimed to kill the strep turns on the child and begins to attack their brain causing inflammation. The brain swelling due to a PANDAS attack can cause dramatic behavior changes(a normal child may suddenly become OCD,displays high anxiety, has sensory issues or verbal or motor tics and more)
It is essential for this students well being that you do not send your children to school when they are sick. Because contract with strep can cause harm to this student we ask that you report all cases of strep to the school office immediately.
Your cooperation with this matter is appreciated.

sign the school name here.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

See my sister is a much better writer then I.. I blog for my own personal journal of sorts but she can write prettier don't ya thing :-)
Love Ya Sis...

anyways.. I thought the meeting went well and left feeling good about it all..

At the end of the school day I got an email from the school letting me know they are going to need my doctor to sign off on when Sweet Pea needs to be out of school, how many days when strep is in her class and so on..
Well you all read my post about the issues I had at the last doctors visit.. So how in the world am I going to get this???????????????????????
I don't have a clue.. but I'm calling the doctors office tomorrow and requesting a meeting with me and the doctor, I don't need Sweet Pea in there listing she hates when I talk about her and her symptoms and basically everything to do with PANDAS.. she doesn't like being different and she hates that this is happening to her.. So just me and the doctor.. then I guess if I feel like yelling, screaming and crying I can do so.. because I think that is what it might take.. but each visit to the doctor he says something different so who the heck knows.
I'll keep ya all posted....
Why does it have to be so hard to protect your child that is harming them.. UGH... you would think people would want to keep a very bright straight A student, loving little girl safe from her brain being under attack, where it can totally change all those things about her leaving her in a state where sometimes you can't even get though to her, where it's like she isn't even there with you..
~sigh~
I think I'll go cry now and then pray and head to bed..
Please continue to pray for Sweet Pea and the doctor and the school...

More symptom days and the 504

Sweet Pea had a rough week last week.. My last post was last Monday telling you about her symptom day she had.. She made it to school Tuesday but when she came home she was a mess with one symptom after another.. DH and I agreed something had to be going around the school and she needed to be out of class. So I called off work on Wed and stayed home with her, she pretty much had symptoms all day and slept alot also.. I think she would have been sick sick like fever and everything if it wouldn't have been for her being on and antibiotic already working to fight off whatever it was because she just didn't feel well. Thursday she went to school and Friday she went to school with the help of Motrin keeping symptoms under control..
Friday night she seemed ok and Saturday she played in her soccer game at 9am but by 10am The symptoms were back.. she was yelling at me and crying her eyes out.. and sad, and all of that..
she ate lunch and I gave her more Motrin and she slept the rest of the afternoon.
Sunday she seemed perfect and I didn't have to give her Motrin.
This morning she was a little moody but I passed on the Motrin, I'm trying not to give her as much.. Her poor little tummy is starting to hurt her all the time.. Taking the antibiotics twice a day and the Motrin is doing nothing to help with that..
I am however getting her probiotics to take to sort of counter act the antibiotics that are killing off the good bacteria as well as the bad.. Hopefully that will help her tummy feel better..

In other news the 504 meeting is set.. Tomorrow morning at 8:15 I will go into the school to meet with everyone to give them all the information I have about PANDAS to help them understand, give them the doctors paper stating that Sweet Pea is suffering with this.. and give them the list of things I'm asking them to do for her which I posted here three post ago..

In that post I mentioned I would would post a copy of the letter which I would like to go home with all the students at the school.. I'll type that out at the bottom of this post..
So that is what is going on PANDAS wise at the moment.. over on my other blog I did write a weekend recap for those of you interested in knowing what is going on in other aspects of my life.. :-) you can read that here.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~``
Sample letter of what i would like to see go home with every student at Sweet Pea's school..

Dear Parents
I wanted to inform you of a child in our school that has an auto immune disorder known as PANDAS(Pediatric Autoimmune Neuropsychiatric Disorder Assoc. with Strep) when a child with PANDAS contracts strep or comes in contact with strep antibodies that are aimed to kill the strep turns on the child and begins to atttack their brain causing inflammation. This swelling causes dramatic behavior changes. A once "normal" child suddenly has OCD, tic, high anxiety, sensory issues and more.
If at all possible we ask that you please do not send your children to school when they are sick. We also ask that if your child has strep even if it is being treated, that you call the school as soon as you find out. We thank you for your help in this matter.

sign the school name here.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I'll find out soon if the school is going to be willing to work with me on this so we can keep Sweet Pea as safe as we can..
Now I know not every parent will listen to this or for that matter even read it.. but the more people informed the better chance I have of keeping my little girl safe.

Another not so well week.

This was Sweet Pea's 2nd week of school and it wasn't the greatest. Symptoms every day.
Monday in the evening she started itching and itching and just fidgeting and saying it felt like 100's of little bugs were crawling all over her ONLY there wasn't anything there,no rash, no redness, nothing that would make her feel the need to itch. Motrin made it all go away
Tuesday she was perfectly fine and happy having a great old time at her Sisters away volleyball game, on our way home I heard he talking I looked in the backseat She was looking up at the roof and talking to herself and with in seconds she was crying her eyes out uncontrollably. Then when we got out of the car she was hanging on me and not wanting to leave my side. I got Motrin in her ASAP and with in 15 mins she was willing to let go of me and with in 30 mins she was back to happy, playing and her old normal self.
Thursday I was on the phone with my grandma I was pretty much in tears explaining all that has been going on, Grandma stopped me and said Lets Praying now.. She prayed with me right there on the phone.. This was in the afternoon while Sweet Pea was still at school. When she came home on Thursday, she was happy, normal, not sad.. We went to princess's volleyball game she did great all though that and was symptom free all night long..
GOT TO LOVE THE POWER OF PRAY!!!!!!!!
Friday she seemed great after school also.. I don't know how the whole night went if she had symptoms or not because she went Friday evening to spend the night at my moms right there means she must have been feeling alright or she wouldn't have wanted to go.. Hopefully she did fine the rest of the evening, I'll find out later today.

It has not been a good week.

Every day this week Sweet Pea has had some form of PANDAS symptoms. :-(
most of them mild.. mood, crying, biting your head off, and most the time Motrin helps her deal with that.
but tonight we had something new happen..
Sweet Pea has been a mess all night..
She has been crying all day about her head hurting her.. started out with her
thinking something was crawling in her hair and she wanted me to check her for
lice.. Nothing.. then it went to it felt like a bee stinging her over and over
right in the same spot on her head..
that is when it hit me this is sort of like the sensory stuff where her cloths
were hurting her.. something in her brain right now is telling her she is
feeling this pain on or in her head.. ~sigh~
I gave her the Motrin but one dose didn't cut it.. an hour and half later she
was just crying out of control that her head was hurting something was biting
her on the head..(trust me I looked to make sure there was nothing on her head)
but she was pretty much gone because if there was something there or not doesn't
matter, it feels like that to her and that at that time was her reality.. Great
big ~sigh~ So I gave her another dose of Motrin and by 10pm she had stopped
crying and was able to go to sleep..
OMG if this is already happening and she has only had one week of school.. what
do I do????? I figured a few moody days here and there.. I didn't expect to see
some of the bigger pandas symptoms coming this early.. I figured I wouldn 't see
that till strep was going around the school big time or something..

and I don't even know if this is a Sensory symptom or a hallucination symptom..
guess it doesn't matter either way.. but when the doctor asked about
hallucination before when this started I was able to say No she has never had
them...

She also wouldn't eat anything today.. She at one grill chess sandwich and that
was it all day long..which she has never been a big eater but that is a little
scary to me.. She just kept saying I'm not hungry I'm not hungry..

I'm praying she is ok in the morning.. I'll give her a double dose of Motrin
before school.. but like i said before that doesn't stop her brain from being
under attack it just mask the symptoms of it. :-(

I wish I knew if someone at her school had strep or is a carrier.. Cuz a carrier
wouldn't even know they were passing strep around..

honestly I want to put her in a bubble, but I know I can't .. and I want her to
have a normal life but the more we go on with this, the more I wonder if that is
possible.

Tomorrow I also start a 3 week subbing job(did i ever mention here that I'm a sub at our local school district?) In any case.. it's a 3 week assignment all day and I'm worried I might need to bring Sweet Pea home for a week or so.. if she keeps getting bad like this.. ~sigh~
Just pray for her and that God will be done in this.. Thanks.

Alot of stuff going on.

Alot has been going on since the last post. In good news most of the days since then have been PANDAS free days. I did say most which means we had a few symptoms days in there also..

On Aug 16, 2010 I got tired of not getting phone calls returned and emails answered, so I went to the school and right to the principle where he had to talk with me and tell me what all I needed to get this 504 thing in place. I had been giving him the benefit of the doubt, thinking maybe he wasn't checking his emails or that he hadn't been at the school listening to my messages.. but NOPE.. When I introduced myself and asked if I could have a minute of his time to talk About Sweet Pea, he said "yes I got your emails and messages" I wanted to scream then why didn't you respond?????? but i just smiled and was nice..

Any ways it looks like it won't be until the 2nd or 3rd week of school when a meeting will take place about the 504.. In the mean time I'm going to have to get alot of paper work in place.. from the doctors and any information I can get my hands on that explains PANDAS to give to the school to get the 504.

But the 504 is important for her to have So that she can do her school work at home when strep is going around the school, or so that she can be given extended time for her work if she is having symptom days that keep her from being able to do her work in any way shape or form..

I'm going to ask that her class room be cleaned and sanitized daily.. but from what my doctor says that is a waist of my time because it won't happen.. but I'm going to try also.. I'm asking in it that she can have bottles of water at her desk or in gym class so she doesn't have to drink out of the drinking fountain, I'm asking that she can keep hand sanitizer with her, and that she can whip down her desk with the Lysol whips after others kids have sat at her desk or when she sits at a different desk(they change class rooms for different subjects, so for Math she might have to sit at another kids desk, then go back to her room where someone was just sitting in her desk for history)

I'll keep you posted on how this goes.

On Aug 17,2010

It was kids day at our county fair, kids get in free.. So we took the family to that.. Sweet Pea had a blast.. at the end before we left she cut her hand open, she was on the spinning tea cup sort of ride and was spinning it and spinning it and then she stopped but left he hand on it and it ripped the skin off her hand.. She did ok with that, as far as didn't freak out or cry her eyes out loudly.. just had tears while we went for first aide.

ONLY.. I WASN'T THINKING

I wasn't thinking about the germs she could pick up.. ripping skin off her hand or not.. the day before I had been so going crazy about keeping germs away from her at school, then I took her to one of the most germ infested places she could go.. thousands of people.. thousands of kids touching those rides she had her hands all over.. I just wasn't thinking at all...

And Sweet Pea paid the price for it on Wed.

Aug 18, 2010

The morning started out great.. Mr Man(my 10 year old ds), Sweet Pea(who is 8) and Little Man(my 5 yr old ds) all went with my grandpa, there Great Grandpa While DH and I went to Princesses(my 14 yr old dd) High School volleyball scrimmage..

Once again I wasn't thinking.. Grandpa had taken the 3 younger kids putt putting(which wouldn't have been bad if I would have thought to take a Lysol whip to clean the club and ball of germs ) and then to Burger Kings play land(an other one of those places where germs fester ugh) I guess I need to get use to thinking like that because putt putt and play lands have always been a norm for us as a fun treat for the kids...this was all in the morning and by lunch time..

Sweet Pea was fine in the morning, in the afternoon she was having the milder symptom of biting peoples heads off...

That evening was to be her 1st soccer practice.. ONLY... She was having the issues of the sensory symptoms of PANDAS happening(this was only the 2nd time since starting treatment that this has happened) The soccer socks, shine guards and shoes, were hurting her really bad.. She was crying and crying so I told her NOT to wear them.. she could just go to practice in her tennis shoes.. but by then she was just pretty much gone, crying and crying and saying she wanted o quite soccer, she wasn't going to play.

Mr Man told her she had to because mom already paid and that was a waist of money, Him saying that didn't help at all, it made her feel bad and started her crying more I told him to just leave her alone, and we came home before her practice even started.. I got her Motrin right away and with in 40 mins she was happy again nothing was hurting her.

I went back to her soccer practice and had a talk with her coach explaining to her that Sweet Pea has Pandas and what it does and how at the moment when she put her stuff on it felt like knives were gabbing into her, and I explained there might be times she won't make it due to this, but that with in minutes she could be fine again and ready to play.. I told her I could pull her from the team if she thought that was best but I would like to keep her on, She said that was fine she understood.. and that they were having another practice on Thursday.

Aug 19,2010

After the major symptom day she had on Wed I started Sweet Pea of with Motrin along with her antibiotic that morning and kept Motrin in her every 8 hours.. She did fine, she went to soccer and had a blast. While at soccer he 8 hours came up for the Motrin and I just skipped it.. an hour later she was clinging to me, scared to leave my side(we were at my moms house where she had bagged to go spend the night) she was wanting to come home(after just bagging for me to take her there) I could tell it was a symptom so I got her another shot of Motrin in her and just stayed with her in my lap at my moms while it kicked in.. with in 30 mins she was happy, and playing and I left her there to spend the night.

Aug 20,2010

she was symptom free

THANK YOU LORD

Aug 21,2010

she had her 1st soccer game of the season they lost but she had a blast..

Though I got sick that night.. head killing me, body hurting all over and couldn't keep food down.. blah...

Aug 22, I was still sick so didn't go to church.. but the kids did and went to the church picnic and had a great time it was at a member of our church house and they live right on the river.. the kids had a blast playing in it..

That brings us to today Aug 23, 2010

Sweet Pea is still sleeping.. it's there last day to sleep in so I'm not waking her, school starts tomorrow.. So far we have had 3 symptom free day in a row I'm praying we can keep going, yet fearing with the start of school it might not be that great of chances..

Keep her in your prayers with the start of school tomorrow..

It has been along time

It has been awhile since i had a moment to come over and update Sweet Pea's blog(or any of my blogs for that matter)
Over the past few weeks we have had our ups and downs.. nothing too major though.
The last week in July Sweet Pea went away to overnight church summer camp for a week.. I was worried out of my mind about so many different things, all PANDAS related.. I remember when my oldest Princess went away from camp for the 1st time I was so worried about her.. if she will make friends, if she will get home sick.. will she know how to wash her hair and get all the soap out.. all those normal things..
This time around not one bit of those worries came into play.. My worries were if she was sad, pouting and crying.. would the adults there just think she was homesick or would they understand it was her PANDAS and give her the Motrin so she wouldn't be spending her day sad and crying.
If she got moody and snapping at people will they be able to tell that was PANDAS give her Motrin or would they think she is just being a spoiled or bratty kid.
Then what if she had the anxiety come on strong and was totally scared of whatever it is making her fearful will they understand reasoning with her isn't going to help she needs Motrin and you just have to comfort her till the fear is gone not blow it off and say it's silly. So many things went though my mind..
The biggest worry was her coming in contact with strep and having all the major symptoms come back and me not there with her..
So I prayed left it in God hand and sent a note to her councillor and the camp nurse explaining PANDAS and what Sweet Peas symptoms can present like sent her antibiotic and also a bottle of Motrin and sent my baby girl off to camp.
She had a blast... she did everything there was to do even learned to water ski.
The Adults in charge of her told me she had a great week no issues and they didn't give her Motrin at all..
ONLY when she got off the ferry boat the last day of camp.. I could see it in her eyes and face that she was having issues.. She was masking it really good(she has been working in therapy on how to deal with her symptoms if she is a where they are happening) One of her ways of dealing with her fears and anxieties is to play things she likes that make her happy..So I think Sweet Pea threw herself into all the fun activities at camp to help herself deal... I'm very Proud of her for that.. but also sort of wish she would have been able to have someone give her Motrin to take the swelling down in her brain so that she would have been able to enjoy herself more without having to deal with it..
But she did have a blast and can't wait till next year to go back..

The day after she got home she had a two hour crying spell for no reason at all.. the 1st hour I was marking it up at just lack of sleep.. but after that hour I gave her Motrin and with in an hour she was perfectly happy no more crying or clinginess..
She had symptom like that for a week after camp..

Since then she has been mostly fine with a break though symptoms here or there but nothing too noticeable.

In other news
yesterday was her last day with the therapist.. She thinks Sweet Pea is doing wonderful.. she thinks there is no long lasting effect from the trauma that she went though with the illness before we figured out what it was that was hurting her and messing her up so badly.. She thinks Sweet Pea knows what to do to keep herself as safe as she can be and that she has coping stuff in place to handle the smaller symptoms if she knows what it is she is feeling.. So unless something new arises we don't have to make any more trips for that.

I'm still working at getting a 504 for Sweet Pea.. I wanted to have it in place before school started.. I don't think that is going to happen I cant seem to get anyone to call me or email me back so I can get the ball rolling on this.. grrrrrr. So I might have to wait till someone is at the school to talk face to face..

So that is the updates School starts the 24th of this month.. Please be praying that Sweet pea can attend school without getting sick..

Has it been 5 days already????

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

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

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

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

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

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

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

We had a PANDAS day :-(

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

It's been 2 weeks..

It has been 2 weeks and Sweet Pea is doing wonderful.. She hasn't been having any issues at all.. Nothing... NOTHING!!!!!!
Thank you Lord..

Today she had her visit with her doctor Dr T.
It wasn't a good visit IMO.. He(Dr T.) thinks it was a great visit..
Sweet Pea is doing better, he is proud of himself for treating her and making her better.. He was the 1st to say he doesn't know much about PANDAS but he is patting himself on the back for figuring it out right away and getting her better..

ONLY now.. he is going back to his older way of thinking and thinking we need to think about taking her off her antibiotic.. Because alot of doctors fear the effects of long term a/b..

BUT!!!!!!!!!!!!!!!!! everything I have ever read about PANDAS says most doctors who don't study PANDAS will either not want to treat it with the A/B or they will want to stop them as soon as the child seems to be doing better... Everything/everyone says as a parent we cant let them do that because as soon as they go off the antibiotic it all starts back.. might not be the full blow thing that made them call it PANDAS in the 1st place but could be the milder side to it which is still there brain being under attack.

He has her on it still and wants her back in a month.. so I have a month to pray that he doesn't take her off yet before I might have to fight for her..

Please everyone I could use your prayer on this matter also..

I need all your help PLEASE.

Pepsi is giving away millions to fund great ideas It's called Pepsi Refresh project.
As alot of you my 8 year old daughter Sweet Pea has just been diagnosed with PANDAS. There is a group of parents with children who have PANDAS who has created a group to win some of this money Pepsi is giving away.. but in order to get the money we need to have the most votes. the groups is called. Parents on behalf of Dr.Cunningham's P.A.N.D.A.S. research

Dr. Cunningham is a research director at the Univ. of Oklahoma. She has been tirelessly researching the autoimmune process involved in PANDAS. She is on the verge of a medical breakthrough, which will help 1000's of children suffering with tics, ocd, etc. receive the proper diagnosis and treatment.
If your wondering what exactly is PANDAS.. read below.

P.A.N.D.A.S.(Pediatric Autoimmune Neuropsychiatric Disorder Assoc. with Strep)When a child contracts strep, antibodies that are aimed to kill the strep turn on the child and begin to ATTACK THEIR BRAIN causing inflammation. This swelling causes dramatic behavior changes. A once "normal" child suddenly has OCD, tics, high anxiety, sensory issues, and more. Most doctors are not aware of the complexity of PANDAS, how it presents itself, or how to treat it. This may lead to a misdiagnosis of clinical OCD, TS, or other mental disorders. Imagine a childhood of unnecessary psychotropic meds, suffering, and unanswered questions. With CORRECT DIAGNOSIS and treatment, remission is possible!We need this grant to fund Dr. Cunningham's study because it gives hope for correct diagnosis and treatment of this alarming disorder.Please help these kids and REFRESH the RESEARCH! Vote Project P.A.N.D.A.S!

My little girl.. is suffering from this.. every time she comes in contact with strep.. she doesn't even have to get totally sick herself.. just just has to be around it pick up a little bit of it and her body starts making these antibodies that then turn on her brain and really messes her up.. PLEASE PLEASE PLEASE take the time to go and vote every day for Project P.A.N.D.A.S.. to help all the children just like my Little Sweet Pea.

To Vote Click HERE

You should see the Project P.A.N.D.A.S. link it will have a spot to vote for this idea.. click it.. when you do it will ask you to either sign into your facebook account or give and email address(just so you can't vote ten hundred times in a day) then it will take you back to the link to click on the vote for this idea button again.. click it and it will count your vote..

We need all the votes we can get..

or go to http://www.refresheverything.com/ in the search type in pandas and it will take you to the voting link for it..

Please help my Sweet Pea and all the children like her and vote.

And Please Please pass this on to everyone you know so they can vote also.. or send them over her to read about it and then vote..

I Thank you all for your help from the bottom of my heart..

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~

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 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..