Tuesday, September 28, 2010


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..
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...

Monday, September 27, 2010

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.

Monday, September 20, 2010

Really bad morning

Sweet Pea had a really bad morning today. She woke up got dressed which was a battle in and of itself. She couldn't' t find anything that felt right on her :-(

that should have been my clue that this was going to be a PANDAS day .

But after going though all her dresses I told her I don't care what you wear just put on whatever feels right.. a skirt and shirt I bought her last spring in the heat of all this PANDAS stuff is what she picked.. She looked pretty, but I knew that was her go to outfit when things were bugging her sensory wise.

So she is up, she is dressed, she ate her breakfast, I want to brush her hair and leave for school.. I was working today and was needing to drop them off at school and get to the school I was working at.. Only I couldn't find her she was off sitting in a room alone with a blanket over her head crying her eyes out... I couldn't get her to stop and tell me what was wrong... she just kept crying and crying..

I tried to get her up and moving for school.. but it wasn't happening.. She was just having a PANDAS morning.. I don't know if the hiding and crying was anxiety, mood sort of stuff, or if she just was hurting and not feeling right from sensory stuff...

I didn't know what to do.. I knew I wasn't sending her to school like this... but I had to get to the school myself working in the spec need class where there are not many subs who can cover that... So I couldn't call off..

So I called my grandma who lives 5 mins away.. asked if Sweet Pea could come stay with them...

She cried the whole way to grandmas but was happy to be going over there.. She hid under the blanket the whole way there also..

Once at grandmas I guess she took a 3 hour nap.

I went to check on her during my lunch and she was up no longer crying.. She still looked extremely sad, no smiles, no happy chatter box like she normally is.. but she said she wanted to go to school.. So I took her in a 1/2 day.

She is still not her self at all, but she is holding it together..

I didn't give her Motrin today because her tummy is hurting her really bad as it is.. I need to go get those probiotics soon and get them in her and try to help her not get sick from that antibiotics killing off the good stuff that keeps her tummy well. :-(

Just not a good day for Sweet Pea.

Friday, September 10, 2010

blah... that is about all I have to say.

Sweet Pea had her monthly PANDAS appointment with her pedi. Wed night Sept 8th.
Every time (at least for the last 4 months) Every time I leave the
office thinking her doctor is an idiot the problem is and he admits it, he just doesn't know all that much about PANDAS.
I am not just saying this.. but I know more about it then he dose.. and he is
too afraid to learn.. He knows enough about it to treat her with the antibiotics
and he said he now feels safe that she needs to stay on the dosage she is on
for at least a year and we will see where we go from there..

BUT for months he has been telling me that she needs to be pulled out of school
anytime strep is in the building.. but he is telling me I need to make that
happen not him. IOW. he is afraid to put his name on a written paper saying
that. WHY because he is afraid of becoming known as "one of those PANDAS
doctors" So I figured I would get my information on how to handle that from one of the PANDAS doctors online.. grrrrrrrrrr... ticks me off.. because he has been
talking about it for months

He was willing to write me up the paper saying he is treating her for the PANDAS
syndrome and that she will need accommodations from the school in dealing with
this.. but he would not go into details as to what those accommodations should
be... I really wanted his help on this, because how the heck am I to know what is too
much or what is not enough that needs to be done to keep her safe and help her
makes me want to scream.

These are all things he has said to me today.
PANDAS is still very controversial, and I don't know what is true and what is not
with it.
I'm still very sceptical with alot of PANDAS stuff..
I think alot of people are saying there kids with major problems have PANDAS
when there are other major underlining problems..
A Year ago I would have said No I did not believe in PANDAS but Sweet Pea's case
is a clear cut text book case of PANDAS, So now I'm a believer, but I still
think that PANDAS kids have other underlining problems and PANDAS just brings
them to a head and makes them worse.(this is not what most of the research has
shown.. Research has shown that yes there are kids with underlining problem who
get PANDAS and those issues worsen.. but there has been so many study also
showing that perfectly normal children just one day caught strep and out of
nowhere started having a world of problems)

Since he is still sceptical of alot of the PANDAS findings.. He doesn't believe
the Motrin can really help... I can prove him wrong on that one if he lets me..
He told me that when I 1st asked him months ago about what I read about the
Motrin study..
So Anyways today when I was talking to him about all the symptoms Sweet Pea's has
been having over the last two weeks, I also added in like I do to everyone I
talk to that the Motrin lessens if not take the symptoms away (basically pointing
out that while symptoms are never good that it's not totally out of control) He
rolled his eyes and said I still think the Motrin thing works like a placebo
I promise you.. I'm not making this up.. I have seen my child totally out of
sorts with symptoms and with in 30mins to a hour of getting the ibuprofen in her
be totally back to normal... Sure maybe once or twice it could have been a
placebo affect... but every time for the last 4 months the symptoms have gone
away with it's use.. and It's just not my child.. there are 100's and 100's of
PANDAS children using this and it is working to lessen the affect of the
symptoms on them. And you know what at this point in time I don't' even give a
crap if it was a placebo as long as it helps my child not be in pain or act like
she needs to be placed in a padded room.
And so after ticking me off with all that talk.. I asked him about how his
meeting with the doctors at the Children's hospital went.
See last month when he was talking about taking her off the a/b he said that
weekend he was going to a lunch meeting with the children's doctors and he
was going to pick there brain about Sweet Pea's case and how they thought we
should treat her and go about it all.

He looked at me sort of with a worried look on his face. and said Well like I
said, PANDAS isn't easily accepted and I was afraid to bring it up at the
lunch. There is no faster way to start a fight amongst doctor then to start
talking PANDAS, I just didn't know how to bring up that I was treating a PANDAS
case without starting a fight and last year I would have been arguing the
other side of the issue and I don't know enough about it to really support it so
I just didn't talk about it..

I guess I should be glad he is honest enough to tell me that, but I'm still sort
of feeling ticked(as you can tell from my vent here) that I really do not have a
doctor to go to who knows what the heck they are doing.. but as the doctor
pointed out most doctors know nothing about this and they all are learning... I
just don't feel like he is willing to learn all he needs to know to be treating
a case of PANDAS. like he is too chicken to admit it to other doctors that it
is real and he has now seen it with his own eyes..


So in the mean time I have an email out to Dr K. who is a known PANDAS doctor, only like 6 hours away from us. I emailed him Sweet Pea's story and told him her treatment as of now and my issues with her doctor(though not in a venting form like this.. I was nice LOL) and I'm hoping to hear a response from him. I have been told by other parents of PANDAS children that he is the best and that he will respond.. So now I wait and see. I just asked him what he thought I should be doing, if there was anything he thinks needs to be done that wasn't, just basically asking his opinion on Sweet Pea's case.
Anyways that is where we are with that.

She is still having symptoms everyday not just one symptom over and over.. but different symptoms at different times just out of the blue and random. But she is not in any major pain from it so that is a good thing, but symptoms are always a bad thing no matter what symptom it is or how mild it is.. :-(

Saturday, September 4, 2010

More on the 504

The school hasn't called me yet to set up the meeting to get Sweet Pea a 504 in place. That bugs me that they are not in any hurry.. but it has given me time to get all the information in place that I need to have for the 504. I have been hitting website after website looking for the best that will explain PANDAS to the school and all who will be at this meeting.. I'll be sharing that information from the website here in later posting.
The other big important thing I needed to come up with was what to ask for that Sweet Pea needs written into her 504.

Here is the list of what I have come up with so far.

1) A note sent home to all parents alerting them to the fact that there is a child in the building with an auto immune disorder, briefly explaining PANDAS and asking them to not send their child to school sick and if their child has step to report it to the school quickly.

2) The School will call to notify me as soon as any child and or teacher, aide, staff member in the school has strep.

3) The school will call me as soon as any child, teacher, or aid in Sweet Pea's class goes home sick with possible signs of strep(coughing ,or sore throat, vomiting and or fever)

4) Sweet Pea will be out of school whenever there is any strep in the building and /or when a child/teacher has gone home sick in her classroom
(how long she will need to be out will depend upon her doctor.... I'm still waiting word from him as what his recommendations are as to how long after strep is in the building does she need to be away from the building)

5) When Sweet Pea is unable to attend school she will be given all her books, her homework, classroom work and assignments and I will be given a list of pages numbers or whatever to what the teachers are teaching so that I can teach Sweet Pea at home.

6) When Sweet Pea is unable to attend school she will be able to do all her test and quizzes at home monitored by me so that she will be able to stay caught up and on track with her classmates.

7) Sweet Pea's teachers will write a note, email me, call me with anything they feel I need to know in order that Sweet Pea is learning the same thing ins the same way as her classmates, and I will call and email them with any questions or things I don't understand. Open lines of communication.

8) A tutor will be given to Sweet Pea if she is falling way behind and or her grades are dropping

9)Extra time to turn in assignments test, quizzes, projects if the PANDAS symptoms are causing Sweet Pea not to be able to do her work

10) hand sanitizer at her desk to be used often and after recess, gym, art, music.

11) Disinfecting wipes to be used by Sweet Pea to wipe her desk top and chair when changing classes between her two teachers.

12) Sweet Pea will be able to keep bottles of water to drink from instead of drinking from the water fountain and may take a bottle with her to gym class for when the other kids get a drink from the fountain.

13) Sweet Pea takes a daily antibiotic to fight off the strep that might enter her body and she uses a lot of ibuprofen to help with the inflammation of her brain to keep down the symptoms. Due to this her stomach gets upset easily. This often has her throwing up or ending up in the bathroom. Sweet Pea will be able to keep a box of crackers or pretzels in her class that she can eat if her stomach is upset and hopefully that can ward off any nastiness and allow her to continue on throughout her day.

14) IF symptoms happen in school:
If it is the sensory symptoms or milder symptoms of depression, anxiety, sadness, Sweet Pea will know they are happening, For sadness, fears and being mad her coping strategies is to distract herself from it , her normal every day school work and learning are often enough to get her through the school day.
If the symptoms is sensory it will often cause her to be in pain. When she knows the symptoms are happening and they are bugging her , She will be able to tell the teacher and be given a dose of Ibuprofen. If after 30 mins to an hour the ibuprofen doesn't help a phone call to me should be made.
If her brain is under attack to the point she doesn't know the symptoms are happening you will see a big change in her personality. Either she will be crying for no reason and won't be able to explain why or will answer "I don't know" when you ask what is wrong. or she just won't respond at all. She could also be throwing a fit that you won't be able to get her to stop. She could also be scared out of her mind over nothing that really is going to hurt her but there will be no explaining to her that her fears are unfounded, or that things are not hurting her. Because in her brain and mind at that time this is her reality. At those times I should be called immediately and I will come get her.
These bigger symptoms normally only happen if she herself is sick so the key here is limiting her exposure with all I have mentioned before.
Also those smaller symptoms can become larger ones if the swelling in her brain is not taken care of with the Ibuprofen.

That is the list of stuff I'm asking for.

What do you all think???

In my next post I'll give a sample letter of what I think the note should say that goes home with the parents.
but for now I need to let the husband on the computer :-)

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..
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.