Monday, June 28, 2010

It's been 2 weeks..

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

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

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

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

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

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

Tuesday, June 15, 2010

Sinus infections caused by strep??

in my last post I mentioned how my oldest Princess had a sinus infection about two weeks ago.. when they told me sinus infection not strep I was happy.. Then how on Friday she had all the symptoms of the sinus infection back.. ONLY while she had that, Sweet Pea had PANDAS stuff going around.. and as far as I can tell and see.. The only sick person Sweet Pea came in contact with was her older sister.. Now that Sweet Pea hasn't been around Princess in 5 days Sweet Pea is back to normal..

I would have put money on the fact that the Sinus infection was somehow strep related.. due to Sweet Pea's reaction..

Today I learned about something called strepococcus pneumoniae here is what it is.

Streptococcus pneumoniae (S. pneumoniae or "pneumococcus") is a bacterium commonly found in the nasopharynx (back of the nose) of healthy people. More than 90 serotypes of S. pneumoniae have been identified. Serotypes of pneumococcus are identified on the basis of differences in the polysaccharide (sugar) capsule of the organism. The presence of pneumococcus in the nasopharynx is referred to as "carriage". Most people have been carriers of S. pneumoniae at some point in their lives. Pneumococcal carriage is more common in young children, is usually transient and generally causes no illness. S. pneumoniae is an exclusively human pathogen and is spread from person-to-person by respiratory droplets, meaning that transmission generally occurs during coughing or sneezing to others within 6 feet of the carrier. Thus, carriers of S. pneumoniae, while generally healthy, are an important source of infection and disease for others.
Occasionally, S. pneumoniae will spread from the nasopharynx of a colonized person into other parts of the body and cause diseases, including otitis media (ear infections), sinusitis (sinus infections) and pneumonia (lung infections). In addition, S. pneumoniae can sometimes get into places in the body that are normally sterile (free of bacteria) including the blood, causing bacteremia, or the lining of the brain and spinal cord, causing meningitis. When pneumococci get into these sterile places in the body, it is called "invasive" pneumococcal disease. A relatively small number of serotypes of S. pneumoniae account for most invasive disease. Invasive pneumococcal infections can result in serious complications or death.

So when I was thinking Princess's sinus infection had to have something to do with strep that would trigger Sweet pea's body to build up antibodies which in return attacked her brain causing inflammation in the brain which brings on the PANDAS symptoms.... I think I was on to something there...

Now to figure out what to do about it.. ~sigh~
not only do I have to watch having her around people with sore throats which might be strep throat, I also have to worry about people with stuffy, runny noses and ear infections...
HOW IN THE WORLD do i keep my little girl safe?????????????????

June 10-14,2010

June 10th was a good day until bedtime.. Sweet Pea started in with the high anxiety stuff, afraid of the dark and night.. a quick dose of Motrin kicked that in the butt.. That and also having a plan.. you see the whole day DH and the two younger kids had been planning a camp out in the back yard in the tent.. But shortly right after dark, Sweet Pea started acting not her self.. pouting sad and then came the fear of seeing it dark out side.. she wanted to stay in the house with me.. and was crying and sad about it.. I knew how excited she had been about this.. and while fear of sleeping in a tent isn't an uncommon thing for kids.. I just had this feeling that hers was a PANDAS thing.. So I grabbed the Motrin quickly.. with in an hour she was happy and wanting to go sleep in the tent.. she said her only fear was what if she had to go to the bathroom in the middle of the night..(which very well might have been her fear, but was made to over react to it by the PANDAS) we got the plan in place.. of DH telling her well if you have to wake me up and I'll walk ya in the house so your not walking in the dark by yourself. That made her feel safe and all was well and they had a great camp out..

Something more about Thursday night.. I was coloring my teenagers hair.. and when I felt her head she felt extremely warm to me.. I said to her you have a fever, she said back.. Yea I know had it for two days but I'm too busy to be sick.. UGH UGH UGH... she never told me she wasn't feeling well, she never complained about being sick, she went on with her normal routine and never mentioned it.. So I put two and two together.. and thought Princess's fever and not feeling well(though not telling me) brought on Sweet Pea's PANDAS symptoms.

Friday June 11
Princess was in the house Sweet Pea in the tent.. Princess and I woke up 1st She was all stuffed up couldn't breath out of her nose and full of sinus junk.. She had just got over(or so we thought) a Sinus infection.. this was like that again.. I looked at her and said.. I know they say this is sinus.. but I would put money on the fact that it is Strep some how..
I said this because of the change Sweet Pea was having..
I had amoxicillin of Princess's(that she didn't finish last time due to them changing her RX to a different a/b) So I started her on that..
I would have loved to run her to the doctor and have some sort of strep test but it wasn't happening.. It was already 10am and she was leaving at 10:30am for a softball tournament..

Sweet Pea when she woke up was having more PANDAS stuff.. crying for no reason, sad for no reason.. moody.. gave her more Motrin and the symptoms didn't seem so bad. She had an eye doctor appointment(no glasses yet she is at 20/25) Then she was leaving to go spend the week at my parents house.. I was worried about her going with the little symptoms she was having.. and me thinking Princess had more then a sinus infection due to the way Sweet Pea was acting.. Anyways..

I told my mom all about what I thought was going on.. and how Sweet Pea was acting she said she would call me if she needed me.
The rest of Friday and all day Saturday my mom gave Sweet Pea Motrin ever 8 hours and Sweet Pea was perfectly fine..

Saturday June 12,
Sunday June 13
and Monday June 14
Sweet Pea has been Symptom free..
Saturday and Sunday Princess was at a softball tournament.. Still fighting the sinus stuff.. taking the amoxicillin and benadryl and starting to feel better.. Monday Princess left for a week at Church summer overnight camp

Sweet Pea while spending the night at my parents with all the other cousins.. I still got to see her and spend time with her to see for myself how she is acting..
Sunday saw her at church and at my brothers for a picnic and she was fine.. happy no symptoms.
Monday my mom brought her home for her softball game and she was my happy little girl.. perfectly fine..

So that is how she has been.
I'm going to post this now.. but then write another post of something I was thinking and found today.

Thursday, June 10, 2010

June 7, 8, and 9th 2010

Things have been really good on the PANDAS end of things.. I can't get over the change I have seen in Sweet Pea since school ended and she isn't in the class room/school building being exposed to strep daily..

June 7, 8 and 9 all symptom free days.

Monday the 7th she had her 1st softball rec league game and her team won 29-14 with Sweet Pea being part of almost every play where they threw the other team out.. she also had hits every time up at bat and had 3RBIs.. But what was the coolest part of the evening was when they got there uniform shirts and she said to me.."mom this is way to big." When signing her up for the rec softball she was in the middle of the full blown sensory issues that came from the PANDAS.. where even the way too big stuff on her was hurting her and making her cry.. so to hear her complaining about it being "TOO BIG" that was a very good thing..Tuesday the 8th.. we went to see her counselor and made our game plan up as how they plan to work with her.. She did get her on the list to see a physiatrist only because her doctor asked for it.. But she is low prioritie so I don't know when she will get in there.. but the counselor seems to be helping a great deal with the high anxiety end of the PANDAS.. helping her have game plan in place to help her deal with the anxiety when it hits..
The only issue we had on Tuesday was she started feeling sick a little bad tummy pains and diarrhea, also said her head was spinning.

Wed.. no PANDAS stuff but still had the upset tummy and dizzy stuff going on.. I called the doctor he wasn't in talked with the nurse I was wondering if it was could be from her meds.. they said tummy stuff could be but not the spinning stuff so they think she caught a bug So if she is showing signs on Thursday of being sick we will go into the doctor.. But whatever it is it isn't bringing on any PANDAS stuff.. Which is a good thing..
Wed night DH and Mr Man was camping in the yard.. Sweet Pea wanted to also but she was starting to worry about sleeping outside.. Her fear came from not the night time or being outside.. but about waking up in the middle of the night and needing to go to the bathroom... as part of her plan she came up with on Tuesday .. She came to me and shared with me the fear so that we could put a plan in place so she wouldn't have to feel afraid if she did wake up and have to use the bathroom... This was an easy one.. She didn't' have to walk from the tent to the house alone at night.. she just wakes up daddy and he would walk her in.. and once we told her that all the fear was gone...
I'm going to have to remember this one for when she heads off to summer camp because the bathrooms are NOT in the cabin..

The only other thing PANDAS related is that I'm looking into getting her a 504,(whatever that is,I'm still learning) for the schools.. So they will have to by law help me keep her safe while at school.
I'll share more on that once I learn more about it.. but that is all I have for now.. :-)

Sunday, June 6, 2010

I need all your help PLEASE.

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

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

P.A.N.D.A.S.(Pediatric Autoimmune Neuropsychiatric Disorder Assoc. with Strep)When a child contracts strep, antibodies that are aimed to kill the strep turn on the child and begin to ATTACK THEIR BRAIN causing inflammation. This swelling causes dramatic behavior changes. A once "normal" child suddenly has OCD, tics, high anxiety, sensory issues, and more. Most doctors are not aware of the complexity of PANDAS, how it presents itself, or how to treat it. This may lead to a misdiagnosis of clinical OCD, TS, or other mental disorders. Imagine a childhood of unnecessary psychotropic meds, suffering, and unanswered questions. With CORRECT DIAGNOSIS and treatment, remission is possible!We need this grant to fund Dr. Cunningham's study because it gives hope for correct diagnosis and treatment of this alarming disorder.Please help these kids and REFRESH the RESEARCH! Vote Project P.A.N.D.A.S!
My little girl.. is suffering from this.. every time she comes in contact with strep.. she doesn't even have to get totally sick herself.. just just has to be around it pick up a little bit of it and her body starts making these antibodies that then turn on her brain and really messes her up.. PLEASE PLEASE PLEASE take the time to go and vote every day for Project P.A.N.D.A.S.. to help all the children just like my Little Sweet Pea.
To Vote Click HERE
You should see the Project P.A.N.D.A.S. link it will have a spot to vote for this idea.. click it.. when you do it will ask you to either sign into your facebook account or give and email address(just so you can't vote ten hundred times in a day) then it will take you back to the link to click on the vote for this idea button again.. click it and it will count your vote..
We need all the votes we can get..
or go to in the search type in pandas and it will take you to the voting link for it..

Please help my Sweet Pea and all the children like her and vote.
And Please Please pass this on to everyone you know so they can vote also.. or send them over her to read about it and then vote..
I Thank you all for your help from the bottom of my heart..

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June 3, 4, 5, & 6, 2010

It's been a few days since I posted.. but Thankfully there has been nothing to report. :-) June, 3,4 and 5th were all symptom free days.. So far today June 6th has been also..
She is one tired little girl at the moment but nothing PANDAS related..
On June 3 was there 1st day off school.. that evening Sweet Pea had league softball practice afterwards she asked if 2 of the girls on her team could spend the night.. I said sure.. So T and K and Sweet Pea were at my house from 7pm till 12:45pm the next day.. They stayed up till close to 1am and woke up around 9am.

June 4 at 12:45pm I took T, K and Sweet Pea over to K's house where the girls played all day long and then all spent the night over there

On June 5, at 1pm T was having her birthday party and T, K and Sweet Pea all went to T's house for the party and then all spent the night there..

I picked Sweet Pea up for church this morning and she fell asleep on the way to church.. however after church this morning she went to my grandma's house so that she could have her play date this afternoon with grandma's neighbor..

YES... it does seem my little girl is back to her normal self at least at this point in time...

Wednesday, June 2, 2010

June 2, 2010

Today was the kids last day of school for the year... I'm very glad it is done and over with.. This will sort of keep the strep germ at bay.. Or so I hope it does.. she will still be playing on two softball teams, and playing with her friends.. and doing VBS and an over night summer camp.. so she will still have ample opportunity to be exposed :-(
But as much as I want to put her in a bubble I want her to have as much of a normal childhood as she can..
I'm thinking summer should be better then the school year in any case.
Today Sweet Peas had some of the mild maybe PANDAS symptoms..
not before school but later in the evening around 7:30pm she seemed to get that panicked state of mind she gets where she sort of obsesses on something and works herself up about it.. This time I was at my grandmas and I mentioned that I think Sweet Pea will get the teacher for next year that I requested.. Sweet Pea heard me and started to freak out that she wants to be in the same class as her friend Taylor and nothing I said( I asked the principle to put them together but she couldn't grasp that idea) made her calm down about it for a good long while, she was even crying about how she "HAS" to be with Taylor. Then this evening she had that fear of the dark sort of like she was doing last July.. not as bad where she wouldn't leave my side but bad enough that she had me going around closing all the drapes and blinds so she wouldn't see the dark..
I didn't give her the Motrin to see if it was PANDAS or not.. I figured it was close enough to bedtime that I would just give her the antibiotic and see if I could get her to sleep with no major issues.. It is 10:30pm now and she is in the bedroom with her little brother watching cartoons.. (no school in the morning and all)
But she isn't crying, being moody or needing me next to her and she isn't having any clothing sensory issues)

Speaking of the clothing sensory issues.. I don't know what to do. when all this started I thought she was having sensory issues(which in a way she was) I fought with the doctor to give me a script to OT.. and after about 3 weeks he agreed.. but with in a few days we found out it was PANDAS. for the most part all the sensory stuff is gone.. It only came back just a little for the 1st time in a month this past Friday.. Anyways back when I got the script she was placed on the waiting list for an OT evolution they got her set up for that on July 1,2010
I don't know if I need to do that now seeing as I now know she doesn't have a sensory issue per say.. Only when her brain is under attack and ONLY IF those antibodies are hitting THAT part of her brain.. So do I need to keep this appointment or cancel it.. Do I tell them I no longer need it or do I keep it in case the issues come back???
I don't know what to do.. I'm going to ask her doctor but since he wasn't in favor of OT in the 1st place I'm pretty sure he will say she doesn't need it.. Maybe I should ask her counselor also and see what she thinks.

June 1, 2010

Today was a symptom free day.. :-)