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.

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.

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..

Sweet Pea's a Strep detector.

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

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

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

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

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

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

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

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

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

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

Something i want Sweet Pea to Know

Really it is something I want all my kids to know and remember..

Psalms 139:14a
I will praise thee; for I am fearfully and wonderfully made:


The eternal God, infinite in his wisdom and perfect in his love, personally made you and me. He gave you your body, your mental abilities, and your basic personality because that's the way he wanted you to be—and he loves you and wants to glorify himself through you.

Psalms 72:18
Blessed be the LORD God, the God of Israel, who only doeth wondrous things.

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..