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.
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 comments:
Post a Comment