PANDAS Awareness Day 2013, One mothers story

 

Today is the First Ever PANDAS/PANS Awareness Day, and even though I don't get the time I would like to keep up with my blog, I can not let this day go by with out a post. 
PANDAS is one of the reasons, my blog time is a thing of the PANDAS..  because it has steeled way a normal childhood from my children.   I don't have the time right at the moment to share our story with PANDAS.  I'm hoping to find  time later today, fingers crossed..
I do however have permission to share one mothers story with you all... and If you lucky I"ll be able to share a lot more with you as I find time though out the day..

Here is her story.
PANDAS AWARENESS DAY…..this is Gianna’s Story

I share our struggle, so that others will not have to struggle.

When Gianna was 1 yr old, Gracie had strep 4 times, Skyler 3 times and I had it 3 times that year. We never swabbed Gianna for strep because the doctor said children that age rarely have strep and she showed no classic strep symptoms. However, she chronically had a fever spike that year of 101.8F. The fever would lower to 99.8F, go away briefly and return a few days later. She almost never had a normal body temperature. At the same time, her neutrophil counts (her immature white blood cells) were at a chronic scary level…just above leukemia levels which had us seeing a hematologist/oncologist for months. We now know she has neutropenia, so when she comes in contact with an infection, her body cannot make neutrophils fast enough to replace the ones her body is using causing illnesses to linger for long periods of time. A compromised immune system was building and creating the perfect storm for PANDAS.

Just before 2 yrs old, Gianna became very sick and a few days later her personality changed far beyond the typical toddler behaviors. She was always such a sweet, loving toddler. However, she turned into a raging, frustrated animal with blank stares and an inability to learn colors, letters, or retrieve words. I remember crying as I laid in bed asking Christian, “What am I doing wrong? I am parenting her the same as Gracie and Skyler, and they were always so sweet, compliant, and likable. I dread getting up every day knowing how difficult Gianna will be. It is like she changed overnight. I guess this is what the terrible 2’s look like. I guess I was blessed to have never gone through that with Gracie and Skyler.” I was heartbroken and exhausted.

Things calmed down between 2 1/2 and 4 yrs old, and I had no answers as to what changed her personality overnight and what brought my sweet little girl back…until Monday, Dec 10, 2012. You see…PANDAS parents can often tell you the day and exact moment they lose their child to PANDAS. She woke in a pee soaked bed. I knew something was wrong because from the moment I put big girl underwear on this child, she never had the slightest accident. Within minutes, I realized she had a fever of 101.9F. She was off…almost mute, stuttering, unable to find the words in her head. Her look was blank. The color in her eyes had disappeared…all that was left were BIG BLACK PUPILS. She sat watching TV while drinking a bottle and in a panic said, “Mommy, I can’t see. I can’t see.” I went to her and placed my hand on her leg so she knew I was there. “Mommy, I can’t hear you.” Pure panic…was my daughter having a stroke? In 2 minutes, her vision and hearing returned.

Off we went to the doctors, MRIs, EEGs, blood work and lots of worry. I came home from all of this to a phone call from my sister. “Jack just tested positive for strep. I just wanted you to know for Gracie’s sake since the kids were all together Saturday.” My heart sank…another child with PANDAS. This cannot be possible. It is supposed to be rare!

The weeks that followed brought me back to the Terrible 2’s Phase. She was totally non-compliant…down right defiant, but with a totally blank stare. She could not process anything we were saying to her. She was no longer behind those big black eyes. This was NOT my Gianna. She did not speak much except to tell me not to step on cracks (OCD), she had to wash her hands because they felt germy (OCD), she could not eat that food because it felt or looked weird (sensory issues), she was scared and could not sleep (anxiety), she was not hungry (anorexia), or she peed her pants (urinary frequency). And to voice these needs was a struggle…each word was lost in her brain which was literally on fire (Learning Impairment) and she spoke like a baby (Age Regressive Behaviors).

With a 30 day course of antibiotics, Gianna slowly returned as her immune system quieted down and stop attacking her brain instead of her infection. That is what PANDAS does. The immune system confuses the basal ganglia in the brain for the same type of cells as strep bacteria; thus, the immune system launches a full blow attack on your brain cause inflammation and neuropsychiatric symptoms.

Knowing the symptoms can change the outcome! Please, share the PANDAS awareness information I have posted today. 10 friends who have 10 friends share the information means 1000’s of  friends will become aware. You will touch a child’s life who is struggling right now, and the parents are sitting crying wondering where their child has gone.




I thank this mother very much for allowing me to share this with you... there are so many children struggling and so many parents wondering what is going on, what happened to my child, who is this child standing in front of me, why is my child acting this way... 

Folks we need to bring awareness to parents, to schools, to those in the medical community.  If you know the symptoms you can change the outcome.  

You can learn more about the signs and symptoms HERE

Help us pass the word along..  There is help for these children if they get the right treatment, but most children are getting incorrect Dx, they are being labeled according to the symptoms and not the cause. 

Another message for Boston Children's Hospital

Just got done posting this over at the Boston Children's Hospital Facebook Page..  It is so very important that they start listening and start learning how to treat children with this disorder.

This is my 13 year old son, getting the RIGHT kind of treatment for PANDAS/PANS
Last year at this time, my sons world was ripped away from him when he got a strep throat infection. My perfectly happy, healthy starting lineman for the school football team woke up one morning, deadly afraid if he played football he would die, until that morning football was his life his most favorite thing in the world. But at the mention of football, he was hiding under a blanket crying uncontrollably, along with that came other fears, and two days after that he had a blinking eye tic, the next morning after that his head was turning to the side and a should shrug tic came also. He was also running a fever so into the doctors we went and he tested Positive for strep that day... They treated the strep but it wasn't enough to stop the immune reaction he was having to the strep.
This last year has been a roller coaster ride of doctors and hospitals and improvements in his conditions only for him to be exposed again to make things worse..
Unlike with my daughter who had PANDAS for a few years now, antibiotics alone wasn't getting his life back for him.. Steroids helped a lot but it was only a short term fix. So in July 2012 he had high dose IVIG done at Children's Hospital of Michigan in Detroit.
BCH Please Please Please.. educate yourself, learn about PANDAS/PANS what it can do to a child, and what is the RIGHT kind of treatment that can help and heal a child... Do not let another child suffer from the wrong treatment.

Rally To Support Family who lost Parental Rights over Sick Child to Boston Children's Hospital

Thanks to Athanasius Kircher who read one of my earlier post about Elizabeth Wray over at my Mindlesschatterofabusymom blog.. I just received this Media Advisory. I knew about the Rally and was planning on going until there was a death in the family and my plans changed.. but I had never seen the Media Advisory.. This is Excellent. Thank you Lynn Johnson.. you are an amazing PANDAS/PANS warrior mom.



October 11, 2012 CONTACT: Lynn Johnson
PANDAS Resource Network
757.642.8700


** MEDIA ADVISORY **

Rally to Support Family who lost Parental Rights over
Sick Child to Boston Children’s Hospital

Oct. 11 – 13, Blackfan Circle and Longwood Ave. Boston
Supporters working to return Elizabeth Wray to the care of her parents are holding a 3 day demonstration at Boston Children's Hospital to protest a lack of proper treatment for Wray's autoimmune disease Pediatric Autoimmune Neuropsychiatric Disorders (PANS). Boston Children's Hospital blocked Elizabeth's parents from seeking treatment at a different facility by having their custody taken away and placed with the Commonwealth of Massachusetts. They and their lawyer are currently under a gag order at BCH's request.
What: A rally to return Elizabeth Wray to her parents for proper care and ask that Boston Children's Hospital recognize PANS for the legitimate medical condition that it is, and stop treating it is a psychiatric disorder.

When: Oct. 11, 12, 13 2012, 8am-3pm

Where: Blackfan Circle and Longwood Avenue across from Boston Children's Hospital


Elizabeth Wray Story: http://www.fightingpandas1.blogspot.com/

The PANDAS Resource Network represents 4,000 families affected by this little known disorder.

Lynn M. Johnson
Executive Director
PANDAS Resource Network
www.PandasResourceNetwork.org
757.642.8700

lynnj0750@msn.com

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

need to make note of this.

Back in May 2010 I wrote this post in it I mentioned this rash Sweet Pea seems to break out with when her cloths were hurting(symptoms flaring) here, even before I knew of PANDAS..
Well since then I have notice that on her bad symptom days that rash seems to always be there...
I have pointed it out to her doctor a few times who tells me it's nothing..
BUT I really REALLY think there is something to this rash, sort of reminds me of a lesser version of a scarlet fever rash.. I just don't know how to get her doctor to listen to me on this..
Last night Sweet Pea came to me and said "mommy that rash is back on my legs" and sure enough it was.. Right back in the same spot it always is when she is having her symptom.. he doctor called it eczema last time I showed it to him(I don't think it looks like any pictures I have ever seen of eczema it looks like a scarlet fever rash to me just alot lighter in color)

This picture here is a picture of a scarlet fever rash I took off google.

These next two picture are of the rash Sweet Pea gets. These pictures were taken in May, but the rash she had lastnight looks the same as these picture.. but I found it doesn't show up as well in pictures as it does looking at it with just your eyes but you can still sort of see it here. I don't' get it.... Why does she only have it when her symptoms are flared up???
It was on her thighs, her back and a little on her belly again last night.. the same places I have seen them EVERY TIME she is having lot symptoms over the last two year.. I wish there was someone I could give this information to who would know what to do with it. Not that the rash is hurting her, sometimes it itches but doesn't really hurt her... but what is the connection with this rash and her symptoms?????
I don't have a clue what this means.. but I wanted to make note of it anyways..

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.

NO posts... that is good news..

When I go MIA here.. 9 times out of 10 it is because there isn't much in the way of PANDAS going on..
which is GOOD news..
Sweet Pea has been doing great, still pretty much symptom free.. a few tiny flares here and there but all mild and goes away either with nothing or with a bit of Motrin..

She had her immune testing done on Dec 22,2010
we go back to the children's hospital on Jan 13 for the results of that..

I'm to see the child psychiatrist on Jan 11 2011 but I'm going to cancel that and make it for after I have the immune results.

Christmas was good and you can view pictures from that over at my main blog
HERE...

That's all I have for now..

HAPPY NEW YEARS .. here is to a healthy 2011

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..

The Immunobiology of Tourett's disorder Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus&Related Disorders A Way Forward

We got ahead of Science, this is a good thing.
Now we need Science to do there part to help these children.
http://www.liebertonline.com/doi/pdfplus/10.1089/cap.2010.0043

Wide eyed but not so bushy tailed.

Dr Kovacevic is one of the leading doctors for PANDAS.. and at his website for his office he has a list of PANDAS & PITAND Syndromes signs and symptoms Click here if you wish to see the whole list. but I have added his #4 here below.

(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

1st grade

2nd grade


3rd grade.

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.

Thank you So much Dr Trippe words could not express the gratitude I feel. Thanks Giving is just two days away and you can be sure we will be giving thanks for you along with the other blessings God has given to us.

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..

The Dental stuff.

I have been a little busy and haven't had a chance to update the blog.
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.
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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.
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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
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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.
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My next update wasn't until 11:55PM on Nov 11,2010
here it is
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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..
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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..

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.

What a morning.

(There is alot I need to fill in the blanks between this post and the one below, but since this is fresh in my head since it happened today I wanted to get it typed out and posted. I'll try to fill in the blanks here shortly)
I don't think I would have believed it if I didn't see it, but Sweet Pea started having symptoms after leaving the dentist yesterday, They didn't do work but they poked around in her mouth for a good while even making her gums bleed. After leaving the dentist 1st she cried for about 20 mins after we left, then she was a little snippy with people the rest of the day.
We went to my grandmas to pick up the boys and my grandma wanted her to wear a winter coat which just about sent her over the edge, Grandma wanted her to stay at her house while I went home got there Halloween costumes and made cupcakes, but Sweet pea was having no part in it because "I'm not going to stay here if Grandma is going to yell at me" Even though Grandma never yelled at her.. So she came with me.
That night at trick or treat she started off pretty hyper, then went from that to snippy and loud, then at the end sort of mad.. stuff like "I don't care I want to go home" When I was explaining to her we were going home we were working our way home that is when she would snap "I don't care I want to go home now"
Once at home she was fine and went to sleep well, but woke up like a bear.

1st she wouldn't get up, she laid in bed 20 mins after I woke her up refusing to get up.. Next we were out of her favorite breakfast food, well really it's not her favorite it's just been sort of like an OCD thing, every morning she HAS to eat 1 and only 1 cookie and cream poptart.. but she ate the last one yesterday and I forgot to go to the store to get more.. This had her crying that she wasn't going to eat anything to which I started going though a long list of things I have and telling her she had to eat something because she had to take her antibiotic which would upset her stomach if she didn't' eat. When I told her i could make her a grilled cheese she said fine.(lately the only things she has been eating if the 1 poptart for breakfast, grilled cheese, mac n cheese, and chicken nuggets, though she doesn't seem to have any trouble with candy) So she did eat and did take her antibiotic. But then she wanted to get dressed in the bathroom(which seems to have become a thing with her, never changing her cloths anywhere but the bathroom) Only her big brother was using it and she couldn't get in there, which sent her into crying again. When he was done she walked in then came out screaming her head off at him that he stunk it up and she wouldn't go in to get dressed for another 10 mins.. understandable since he did stink it up.. but she was mad and angry and crying about it, just way over the top over reacting for a normal person, but seems to be par for the course with PANDAS symptoms.
Once dressed it was time to walk out the door, Mr Man was mins away from being late So I dropped him off at his school 1st since Sweet Pea and Little man's school doesn't start till 15 mins after Mr man.
This set Sweet Pea off even more she was crying and yelling kicking off her shoes screaming she isn't going to school now.. She worked herself up so much that it really was imposable for her to get out and get into school. So we dropped Little Man off and I brought Sweet Pea home with me(3rd time this month she was dressed for school then couldn't get there because of emotional stuff) where she continued to cry for 3 hours. Most of those 3 hours were just sob, but an occasional throwing the pillow across the room(or whatever she had close to her or in her hand would be tossed) And saying stuff like "Call Dr Trippe he will make this better" or "Why do I have to feel this way" and " Why does everything bad always happen to me"
It went from that to her working herself up over school and this made her cry more "I'm going to flunk 3rd grade" "I'm not going to pass, I just know it" "everyone knows I'm not going to pass" "I just want to be homed schooled that way I won't flunk when I feel like this" from there it went to "Why is everyone always being so mean to me" "no one likes me" "Everyone is going to make fun of me for being this way"
All the while she can't stop crying.. she can't really sit still every like 10 mins she is moving from one place to cry to the next. One minute wanting to be in my arms having me holding her to the next yelling at me because "YOU HATE ME"

After 2 hours of this, and her asking me to call her doctor about 3 different times. I made the call..

He issued more blood work(2nd round this week, 3rd round in the last 12 days)
He also told me that the 2nd set of numbers all came back pretty much in the normal range also.. and once again said we might need to treat the symptoms with Zoloft, which I really really really don't want to do. :-(
I know if these numbers come back in normal range he is going to push for the Zoloft hard. but I also have learned that in PANDAS girls there numbers are very often normal.. but I don't know if her doctor knows this.
Her doctor has been doing the best he can for her, but I'm really really thinking it is time to call the PANDAS doctor in NJ again and hand him Sweet Pea's case and let him be the one to treat her for PANDAS, and let her pediatrician go back to just being her normal when I'm sick or need a check up doctor.

When I was told by another PANDAS parent about girls numbers often showing normal they pointed me to this survey

In this survey they show a graph with symptoms.. out of these 21 symptoms Sweet pea has 12 of them.
GI issues
Sleep Issues
Depression
Restrictive eating
Phobias
Social Anxiety
Age Inappropriate Tantrums
Age Inappropriate Bedtime rituals
Age Inappropriate separation
Mood issues
Obsessions
Sensory Issues

And I guess she seems to follow suit when it comes to alot of the girls not having elevated ASO Titer

Mind you while she has had all of these symptoms she doesn't have them every day maybe the mood has been and issue most days since school started.. but the others ones come and go and can hit at any given time normally without warning.

Still alot going on.. here is another update.

I guess I shouldn't have said no major PANDAS stuff since Oct 2nd when I wrote that post on the 17th.. ~sigh~

On The evening of Oct 17th Sweet Pea ended up sick upset stomach and diarrhea right before we were leaving for evening church. so she ended up home.
On Monday the 18th she was still sick, slight fever, and still all the stomach issues and her head was hurting.. Little Man ended up sick that day also.

The funny thing about this is that though she was sick there was still no signs of PANDAS symptoms at all

Tuesday they both woke up feeling good so off to school they went. On Tuesday evening Sweet Pea was complaining about a rash on her legs that was itching her.. I had no idea what sort of rash it was.. I didn't think strep rash because she still was not having symptoms. a few hours later Princess(my 14 year old) ended up with the same sort of rash on her arms

Wed Oct 20,2010 I kept Sweet pea home from school because I didn't know what the rash was and thought maybe it was break through chicken pox or something that could be spread on.. But still no symptoms of PANDAS which i was happy for..
Late that afternoon I took both her and Princess to the doctor to see what the rash was, turns out it was a viral rash brought one by the virus she must have had on Sunday and Monday(though Princess never was sick??)
As we were leaving the doctors office she started to act a little weird.. I'm not sure if it was normal kids acting weird stuff or some sort of OCD compulsions type stuff..
As we left the exam room and walked down the hall she didn't walk in front of any of the other exam room doors she jumped past them each and everyone of them.. sort of like walk walk walk, jump walk walk walk jump.. I didn't think a thing of it, she was happy and in a good mood So maybe she was just playing around.. Then when we reached the receptionist desk she ducked down so they wouldn't see her and sort of walked bend over past them.. still didn't think a thing of it.. once past the desk she stood up by the wall where the receptionist couldn't see her like nothing going on at all and asked if she could head out to the waiting room to see the fish.. I said yes..
So she opened up the door which in between the checking out and the waiting room and she walked upright right to where the check in window is and then she ducked down and walked under it.. This made me sort of start to wonder and watch her a little closer.. Once pasted it she walked upright over to the fish. I was still at check out but could see her though the glass windows at the check in side.. when she saw I was about down she walked back to me.. ducking again when she came to the check in window.. Weird.. but then it got better..
Once out in the parking lot she started jumping from white line to white line never walking on the black top just jumping from line to line.. Once again if I had never heard of PANDAS I would just think normal kid messing around sort of thing.. but I had to ask her what she was doing since I was starting to wonder if it was just a normal kids thing or not.. so I asked "what are you doing?"
She said "I have to do it this way" The words HAVE TO just jumped out at me.. so I asked "why?" she said "because I'm not aloud to walk on black" ????????
This had me wondering if it was an OCD thing where the rules that are going though your head make you do different things or her just messing around. but the whole black thing sure explained the way she was acting On Monday and Tuesday which I didn't think anything of until she did/said this..
Our driveway is black topped. All day Monday and Tuesday and even going to the van to get to the doctors on Wed.. She asked if I could carry her, she said "because I don't feel good" on Monday and "because I'm still tired from being sick" on Tuesday.. Wed she just asked if I could give her a piggy back ride to the van.. So when I thought about this.. She honestly had not walked to or from the van on our "black" topped driveway in days. And now here she was not walking on the black top of the doctors office parking lot she was jumping from white line to white line.. This was bugging me.. so on the way home I asked her "So if you can't walk on black how are you going to get into the house when we get home" She said "you can park close to the grass and I can jump out and just walk in the grass up to the back porch"(our driveway is in our back yard)
She had it all figured out, so me wanting to see how far this would go.. Parked the van the furthest away I could from the grass. Everyone got out of the van and walked up to the house except Sweet Pea.. she had the side van door open just standing in the van looking out for a good two minutes just looking out at the driveway.. I didn't bug with her I wanted to see what she would do.. Then she took a big jump towards the middle of the driveway sort of 1/2 way between the van and the yard, once there she sprinted into the grass, then she walked normal in the grass up to the porch.. and we didn't mention it again. I did have to go outside to shut the van door though..
Still don't know if that was an OCD thing or her messing around.. But that started a stream of other PANDAS symptom days.
On Thursday when she woke up she was extremely moody.. and crying.. but she went to school.. Thursday after school she almost had a meltdown that I hadn't got her signed up for her gymnastics like I said I would do after soccer ended(well soccer just ended on that Saturday I was going to wait till Nov) But to keep her from having the melt down I got her in for that nights class.. She did well in it..
But came home still moody.. She didn't sleep well that night..
and the next morning was bad.

Friday Oct 22,2010
She woke up in full PANDAS mood.. just jumping on everyone, little things making her crazy and setting her off.. That day wasn't going good for a normal person, couldn't find a brush which my oldest one had taken all 3 of our brushes and lost them or forgot them over the last few days and now our last brush was missing and my 10 year old Mr Man misplaced his comb. Sweet Pea was willing to just toss her hair into a ponytail but she was so moody about it and just chewing and chewing about it.. I didn't much care if I got Little Man's hair in place we were running behind.. BUT Mr Man the 10 year old had school pictures that day and I HAD to have his hair done so we were just going to be late until we found that comb.. we found it and got out the door 5 mins later then what we normally do..
That sent Sweet Pea over the top into a full out fit crying and crying and refusing to go to school because she was going to be late.. I couldn't get her under control she was gone in a PANDAS attack.. So she stayed home that day..
The rest of the weekend was much of the same.. crying and crying and crying.. with a few hours of normal Happy Sweet Pea here and there..

This brings us to Sunday night Oct 24th it was crazy hair night at Awanas.
She did her hair up in about 25 ponytails.. she was very pleased with it, she even did her friends hair just like it so she could go with us.. Once at church as she was about to walk into club at check in.. she had a mood swing from happy excited to just mad about something and started ripping out every rubber band out of her hair saying something in a mad voice about how she doesn't want them in her hair just get them out and she wasn't being to gentle when she took them out.. I didn't fuss with her I just gathered all the rubber bands from her and got her into club.
When club was over she was having issues with the van ride home and it being dark out, she didn't want to leave the van once we got home..
At bedtime it was time for her evening antibiotic and she was fighting me about taking it.. "I don't want to, you can't make me, Why do you hate me and make me take this all the time" SOOOOOOOOOOOOO Not like her.. she is normally the one who reminds me about it and happily willing goes and gets it.
I wasn't going to battle with her about this.. I mean this is what is keeping her well, and or going to make her better.. It wasn't an option.
So I filled it into the dropper and dropped it into her mouth..

This started her screaming at full force she didn't want to spit it out, she doesn't like being sticky, think that is the only reason she didn't.. So she was trying to scream while holding the meds in her mouth and keep it from dripping out and also not swallowing it..
The way she was screaming had her lip pulled over her gum and when she did that I saw it.. What I think is the cause of our problems..

Her gum was all red with a bump like thing of puss in it.. and abscessed.

I'll end this here because I'm tired and it's almost midnight and I'll continue this story tomorrow.

So much going on.

There has been so much going on PANDAS wise over the last two weeks that I don't even know where to begin..
I'm just going to do a very quick not very interesting update there just so I don't forget stuff.. I'll go into more details when I have more time.

Oct 2,2010 Very bad PANDAS day crying for 5 hours.
Oct 3,2010 better but not good PANDAS day.
Oct 4,2010 meeting with her pedi to talk about PANDAS stuff
Oct 6,2010 emailed and talked on the phone with a PANDAS doctor in NJ.
Oct 7,2010 back with another meeting with her pedi. Also blood work done
Oct 11,2010 another doctor appt with the pedi. who is getting her set up with a doc at the Akron Children's hospital.
Oct 15 Akron Children's call to set up the appt for Dec 7,2010

I was to have a phone call with the PANDAS doc in NJ on the 18th but cancelled it for now.. I think I'll call and set up a new time soon.

In the mean time.. 10/2/10 was the last bad bad day we have had in the last two weeks.. most days have been very mild PANDAS stuff moodiness, and crying.. but no major stuff.

Sorry so dry here, but I needed to document this so I didn't forget.. I just haven't found time to write out the whole long sad story..

Probiotics..

I almost forgot to mention today... But I went out and got Sweet Pea a probiotic today.

When she started the antibiotic 5 months ago(or how ever long ago May was) her doctor just told me to have her eat alot of yogurt..

Well Sweet Pea is so sick of yogurt I think at this point in time she even hates the word yogurt.. For the last 3 weeks maybe 4 now.. she has just simply refused to eat it..and I know I'm the mother and she has to do what I say, yada yada yada..... PLEASE.. you deal with a child with PANDAS and all the issues that goes along with that and you learn to pick your battles even more wisely then any parent with normal healthy children.. so not to be rude.. but SHUT UP(sorry that is just the mood I'm in LOL)

OK.. back to what I was saying..

Her stomach has been hurting her pretty much every day even before she stopped eating yogurt, so I have been looking around for the right kind of probiotic to give her.. I found 3 that looked good for children online, but never found them at any of the health stores.. I wanted to try one more health store before I ordered online.. Well I did not find the brand i was looking for, but I found Children's chewable(since she can't do pills yet) in two flavors, Cherry and orange. it seem to have all the same stuff in it as the ones I was looking at online So I bought them.. one of each flavor cuz you never know with her what she might like and be willing to take one day and not the other..



What I like about this one as oppose to the one I was thinking of ordering online.. This one you take on an empty stomach, the other you had to take with meals, This one is a chewable the other was a caplet and I would have had to open it and mix it in one of her foods.. and I would have had to do it at lunch time meaning I would have had to get the school to agree with something more, they already act like I'm being a pain in the behind.. that or I would have had to be at the school everyday to give it to her. This she can take anytime before she eats but it has to be at least a 3 hour space between it and her antibiotic..



She takes her morning a/b between 8 and 8:30am(she takes it with food as to help her from having an upset stomach) Her night time dose she gets between 8:30 and 9pm with a bedtime snack. So I'm thinking right after school will be a good time for the probiotic.. she will have an empty stomach and there is enough time space between both doses of A/b.

Ok it's now ten mins past midnight.. I must get myself to bed..

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.