Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

AmbersMommy

Does IVIG cure PANDAS?

Recommended Posts

Hi all,

 

We are in the process of getting pre-approval for IVIG. Now with the possibility looming in the near future I wonder if we are doing the right thing. We have only tried one antibiotic with some success, but really she still isn't herself. She walks around the house in circles with her head down. She seldom speaks. She didn't speak much before, but now it is much worse. She laughs for no reason. She doesn't express, "normal" emotions anymore. She rarely wants a hug or any physical contact. She has numerous other issues I believe are PANDAS related. Should we try another antibiotic before we go directly to IVIG? Is IVIG going to become the first line of defense for PANDAS kids. Would it be already if it were more accessable? Do the PANDAS kids have more success on antibiotics or IVIG in general? Is there an, "in general" with PANDAS kids or do you really have to just hunt and peck to find the right thing that works for your child? I am going absolutely nuts. My dd who is 6 years old doesn't sleep well at night. We are totally turned around. She falls asleep after midnight, closer to 2:00 AM most nights. On some nights when she does go to sleep at a more reasonable time, she will wake up at 1 or 2 AM and is up for the day. I don't think I am thinking very well anymore with the lack of sleep myself. Is IVIG the right thing? Please chime in. I really need input from people. I don't know if we are taking the appropriate steps. Just an FYI we see Dr. B.

Share this post


Link to post
Share on other sites

ahh...the $50,000 question!

 

If you scroll down to the middle of this thread, there is some information on antibiotics, and then IVIG/pex http://www.latitudes.org/forums/index.php?showtopic=6266

 

What antibiotic is your dd on (and dose? and how much does she weigh). Some kids do better on Azith., others on Augmentin XR, so if your child doesn't do well on 1, I think it makes sense to try the other. There are also some kids that have done well with some other abs (Rifampin, clindamycin...)

 

For us, we didn't jump into IVIG right away. We had initial sucess with Azithromycin which we started June 2008 (4th antibiotic we tried). Howver, over the next year (yes, we stayed on full-strength Azith) we noticed a change of "baseline" and (relatively mild) exacerbations with non-strep illnesses (H1N1, fifth's dz) and strep exposure (when sibling or mom got strep). With each exposure/illness, our dd never got back to her original "baseline" and this "baseline" was rising. She also had ongoing learning issues (handwriting, math, margin drift) which did not resolve with antibiotics. We finally did IVIG in Aug. 2009 (and a 2nd IVIG May 2010). Right now we're still not 100%...but we are light years better than we were 2.5 years ago. I think it is too early for us to say if IVIG #2 has "done it", and we are thinking of switching to a high dose of Augmentin XR to see if that will bring us to 100%.

 

On the other hand, some kids on this forum that have done well on antibiotics (sometimes with steroids). Others, end up doing IVIG. So, I think there are no easy answers.

Share this post


Link to post
Share on other sites

How long has your child had pandas? I wish my dd had it back last fall when she was first diagnosed instead of suffering for 9 more months while we tried 3 antibiotics and steroids. Though my dd was diagnosed last fall, she has suffered with this for almost 4 years now so she's been a tough case.

Share this post


Link to post
Share on other sites

ahh...the $50,000 question!

 

If you scroll down to the middle of this thread, there is some information on antibiotics, and then IVIG/pex http://www.latitudes.org/forums/index.php?showtopic=6266

 

What antibiotic is your dd on (and dose? and how much does she weigh). Some kids do better on Azith., others on Augmentin XR, so if your child doesn't do well on 1, I think it makes sense to try the other. There are also some kids that have done well with some other abs (Rifampin, clindamycin...)

 

For us, we didn't jump into IVIG right away. We had initial sucess with Azithromycin which we started June 2008 (4th antibiotic we tried). Howver, over the next year (yes, we stayed on full-strength Azith) we noticed a change of "baseline" and (relatively mild) exacerbations with non-strep illnesses (H1N1, fifth's dz) and strep exposure (when sibling or mom got strep). With each exposure/illness, our dd never got back to her original "baseline" and this "baseline" was rising. She also had ongoing learning issues (handwriting, math, margin drift) which did not resolve with antibiotics. We finally did IVIG in Aug. 2009 (and a 2nd IVIG May 2010). Right now we're still not 100%...but we are light years better than we were 2.5 years ago. I think it is too early for us to say if IVIG #2 has "done it", and we are thinking of switching to a high dose of Augmentin XR to see if that will bring us to 100%.

 

On the other hand, some kids on this forum that have done well on antibiotics (sometimes with steroids). Others, end up doing IVIG. So, I think there are no easy answers.

Share this post


Link to post
Share on other sites

How long has your child had pandas? I wish my dd had it back last fall when she was first diagnosed instead of suffering for 9 more months while we tried 3 antibiotics and steroids. Though my dd was diagnosed last fall, she has suffered with this for almost 4 years now so she's been a tough case.

 

That is a good point...it seems that the more chronic cases are more likely to need IVIG.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...