Saturday, January 22, 2011

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.

Monday, January 17, 2011

update on all the sickies.

It's been about 10 days.. Everyone is finishing up their antibiotic, and they all seem to be feeling better.. They go back to the doctor on Thursday the 20th.
I want to ask the doctor to retest them for strep.. Whoever it is they see I'm sure is going to look at me like I'm crazy.. Since never in my 15 years of being a mom have they ever retested one of my kids for strep after they had just treated for it.. But I'm worried.. what if the antibiotic didn't kill it all, and there is some strep in there still hanging on, just waiting to wreck havoc on them and have it mess up Sweet Pea as well.

Mr Man got a secondary strep infection and I had him back at the doctors last Monday because somehow the strep throat moved though his boy and started affecting his joints(in this case his right knee) The Doctor called it post secondary strep. At the time he said we would just finish the treatment of the strep and if it is still there at the end of the antibiotic Mr Man was on, we would need to do more treatment. At the moment the pain seems to be gone from it, so I don't' think we will need to treat more.. It's just that strep is a very tricky thing and I just need to be sure IT'S GONE.....

Sweet Pea even keeping her away from home and all the sickness for 48 hours still got very symptomatic.. Nothing Major.. Just alot of little OCD stuff, having to eat the same thing for breakfast in the same way every day.. Moody.. Obsessive thinking and thoughts, crying.... but no major crying fits, no major melt down.. but alot of snapping at those around her and tears.

Saturday, January 8, 2011

A house full of Strep

Had my doctors appt Friday, Yesterday Jan 7,2011
Sure enough I tested Pos. for Strep also.. They started me on a z-pack and we are getting DH started on antibiotics also..

so everyone in our family are now on antibiotics.. hopefully we will kill it off quickly the 1st time round..

Sweet Pea is still at my grandmas not to be exposed to all of this strep. Tonight around 6pm everyone will have been on antibiotic for 24 hours so it might be safe for her to come home.. I just don't know..
if she wants to come home I'll bring her home.. but if she is willing to stay one more day away from this sick ward called our home, might not be such a bad idea for her..

Thursday, January 6, 2011

Sweet Pea's a Strep detector.

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

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

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

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

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

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

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

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

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

Sunday, January 2, 2011

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

That's all I have for now..

HAPPY NEW YEARS .. here is to a healthy 2011