Considering IVIG

[dcmom]

My daughter has had her first episode of pandas recently. Thank you to everyone for your valuable information. This episode, and the research that I have done have me in a total panic (I am sure you can all relate). We are seriously considering IVIG- maybe, assuming we can get this under control, if she has another episode. Part of me wants to not let it go that far, and do it now (she is 5).

 

Has anyone been able to successfully control pandas long term with antibiotics?

 

Have those who have has IVIG, had success or disappointment?

 

Has anyone had luck getting insurance to cover it, and if so, how?

 

Thank you for your insight. I wish somewhere we could compile all of our info in some type of format.....

[Worried_Dad]

Hi, dcmom:

 

Here are some threads you might find useful.

 

http://www.latitudes.org/forums/index.php?...304&hl=IVIG

 

http://www.latitudes.org/forums/index.php?...419&hl=IVIG

 

http://www.latitudes.org/forums/index.php?...428&hl=IVIG

 

http://www.latitudes.org/forums/index.php?...300&hl=IVIG

 

http://www.latitudes.org/forums/index.php?...173&hl=IVIG

 

http://www.latitudes.org/forums/index.php?...273&hl=IVIG

 

http://www.latitudes.org/forums/index.php?...189&hl=IVIG

 

Hope this helps. I think IVIG has helped most kids on here - often significantly - but it's not an immediate cure-all for many of them, and results depend on age, symptom severity, time before treatment, etc.

[bronxmom2]

I am in the same place as you DCmom... Just discovered this thing and have become totally panicked.

 

Just wanted to wish you luck.

 

My plan is to get his tonsils/adenoids out asap, get this thing under control with antibiotics, and try to figure out how we can do IVIG. Because we all want our children completely restored!

 

I think I read somewhere that you can't do IVIG until the infection is definitely cleared?

[EAMom]

Good question DCMom. If your dd is only 5 you certainly have a lot of years of avoiding strep ahead of you!

 

250mg Azith daily (and 10mg prozac) doesn't control our dd's symptoms 100% when she is exposed to strep or when she got fifith's dz. I would say they are very helpful, and keep things from getting full-blown. Our dd is about 55 pounds so she is on a pretty good dosage of Azith.

[browneyesmom]

I think I read somewhere that you can't do IVIG until the infection is definitely cleared?

 

Really??? I hadn't even thought that far ahead! Do you have that link or does anyone know more about this?

[EAMom]

I am in the same place as you DCmom... Just discovered this thing and have become totally panicked.

I think I read somewhere that you can't do IVIG until the infection is definitely cleared?

 

I haven't read that either Browneyes but do wonder if that would make a difference. If there is a continuous strep infection (pre/post/during IVIG) wouldn't that be just as bad as getting a strep infection after IVIG? I know a sinus infection post IVIG set Worried Dad's son back. And I've heard this from others...that you want to be on prophylactic abs for at least a year post IVIG for good results. So, if you are on abs, but they aren't "getting the strep" (like amoxicillin doesn't always work) I can see where this might be a problem. I don't really know though!