Jump to content
ACN Latitudes Forums

Has anyone found complete success with IVIG? How many treatments to ac


Recommended Posts

We can't seem to get a definitive answer that IVIG works....most of the people that have reported success have only found success for a short period of time. The symptoms always seem to reappear. If that is the case, why the IVIG??

Is there anybody that has a symptom free child post IVIG?? If so, how long symptom free? What is the prognosis for long term?

 

We are contemplating the positives with the negatives for IVIG. Also, would like to hear the negative side affects so that we can see both the good and bad. Would love some answers, as we are perplexed which route to take.

Link to post
Share on other sites
  • Replies 42
  • Created
  • Last Reply

Top Posters In This Topic

I would like to add that I am very interested to see if anyone responds. I realize the possibility that those parents who receive IVIG, and have complete success, may not return to our little family/forum. I implore those who are doing IVIG now- to not forget us. My dd had plasma pheresis in October, and is doing very well since. She is, however, not cured. My best case scenario hope is that over time her pandas reactions diminish- making this disorder very manageable. I have made a promise to myself to remember to update the forum on our success (fingers crossed) every 6 months to a year. PANDAS has made (best case scenario) a lasting imprint on myself, my dh, and my parents- hopefully not so on my children.

Link to post
Share on other sites
We can't seem to get a definitive answer that IVIG works....most of the people that have reported success have only found success for a short period of time. The symptoms always seem to reappear. If that is the case, why the IVIG??

Is there anybody that has a symptom free child post IVIG?? If so, how long symptom free? What is the prognosis for long term?

 

We are contemplating the positives with the negatives for IVIG. Also, would like to hear the negative side affects so that we can see both the good and bad. Would love some answers, as we are perplexed which route to take.

 

I feel that my dd has had a very successful post IVIg treatment. She had IVIg 14 months ago and has continued to be well. She has had one tiny flair (7 months post IVIg) in symptoms after an exposure (a whole weekend) with strep which we gave her full strength antibiotics for and she immediately got better. She has done fine with H1N1 flu and viral illnesses that she has gotten.

 

Negative side affects? She got really constipated for about a week.

 

IVIg saved her life and perhaps ours. She was very severe and considered 'classic' pandas, with sudden onset. She for sure was exorcist type without the supernatural stuff. She didn't really have tics but severe OCD. She was age 5 at symptom onset and had near constant symptoms (very little waxing /waning that I hear people speak about) until she had her IVIg at age 7. She had changed to a completely different child and now I have her back.

 

I don't know the prognosis. I don't trust her to respond appropriately to strep, that's for sure. When she was 3 she had post streptococcal glomerulonephritis too. I'm not thinking IVIg is a cure all necessarily. And I would do it again if we needed to in a heartbeat.

Good luck with your decision. I hope your child gets well soon.

regards,

amy s

Link to post
Share on other sites
can someone clarify what "exorcist" symptoms look like/mean?

 

It looks like the child is possessed by demons. I think if this happens to your child you know exactly what it means. It is an extreme fight or flight reaction from out of nowhere. Child becomes extremely aggressive, violent, and detached from reality for minutes or hours at a time.

Link to post
Share on other sites

Both Dr. T and Dr. K sincerely believe that some historical accounts of childhood "possession" - like the real-life child whose story inspired the movie "The Exorcist" - were actually severe cases of rapid-onset PANDAS. Dr. K has grad students researching some of these historical accounts to look for evidence of infection prior to symptom onset.

 

Candidly, there were times immediately after our son's 2nd exacerbation (1st with "classic" PANDAS symptoms... he was originally diagnosed with Sydenham's chorea) when he behaved like he was possessed by demons. He was utterly unrecognizable, an alien and terrifying presence in our house who could not have been more different from the sweet, sensitive, pacifistic kid we had known.

 

So the classic rages, the violent behaviors, the screaming and vocal and motor tics, the wild emotional lability all fuel the "exorcist" comparison, I think. Many parents on this forum have experienced this... and, if you're like my wife and me, you prayed for divine intervention! :wacko:

 

 

can someone clarify what "exorcist" symptoms look like/mean?
Link to post
Share on other sites
Amy- thank you! That is really helpful. Did you get the ivig with Dr K- or at his dosage? Was it one time?

 

She had the standard 2 day IVIg at Dr. K's dosage. Only required that once.

 

Regarding coming and posting updates here....

 

I come to this site almost every day, several times. I wish I didn't. I am suffering from PTSD from our experiences and I really feel like I personally am doing better if I miss a few days. I do try to post updates when it seems appropriate though. Also, to be honest there are times that our experiences just don't match the conversations and so I find it strange to post at times. I am always thinking of these kids and families on this site and wondering how they are doing. I would love to meet up with some of you in Chicago if anyone is going to the Autism One conference, let me know!

Link to post
Share on other sites
Is there anybody that has a symptom free child post IVIG?? If so, how long symptom free? What is the prognosis for long term?

 

We're at 27 weeks post IVIG and almost all symptoms pre-IVIG have disappeared. Our dd9 had anorexia nervosa, hallucinations, suicidal statements, measurement rituals, significant defiance, compulsions, movement disorders, fine motor issues, ... These symptoms are absent. We still have a small amount of social anxiety -- but this seems an underlying condition and is not inhibitory.

 

You should make sure that you really think the symptoms are auto-immune in nature. If not, then IVIG will probably not help a lot.

 

We had a couple of "bumps" most notably the first 2 weeks and then at week 16 week we had a flare. We were not able to isolate what happened at 16 weeks, but it lasted 5 days and is now gone again. Bottom line, we're in good space now.

 

Can't tell you the prognosis yet, but we seem to fall in the camp that a single dose was sufficient. To others, the most notable change is the absense of the movement disorder. To us, the most significant change is everything else (the lack of compulstions, the lack of defiance, the improvement to fine motor skills, the decline of separation anxiety, ...).

 

Regards,

 

Buster

Link to post
Share on other sites

Thanks for clarifying. I had assumed this was what it meant, but wanted to know for sure before I bring it up to Dr. L on Tues. Trust me, I have seen that "exorcist" moment all too many times in the last month. Last night it got so bad we actually had to call the police in to "shock" him back to reality long enough to get the Risperdal M-Tab down him. It's like he can go from being this normal kid playing with his brother, and then his brain gets stuck on his obsession/compulsion (wasting time, doing something, buying something, needing to know what's happening) and he turns into a possessed screaming devil child turning purple and foaming at the mouth, writhing around, breaking things and - well, just possessed. It is so ##@*** scary!! . And in an hour or two when it's over, he's back to himself, eating pizza and watching the basketball game, but exhausted...While I hate to think anyone else has gone through this, it is SO relieving to know I am not alone....

Link to post
Share on other sites
She had the standard 2 day IVIg at Dr. K's dosage. Only required that once.

 

Regarding coming and posting updates here....

 

I come to this site almost every day, several times. I wish I didn't. I am suffering from PTSD from our experiences and I really feel like I personally am doing better if I miss a few days. I do try to post updates when it seems appropriate though. Also, to be honest there are times that our experiences just don't match the conversations and so I find it strange to post at times. I am always thinking of these kids and families on this site and wondering how they are doing. I would love to meet up with some of you in Chicago if anyone is going to the Autism One conference, let me know!

 

 

Amy S.-- Can you post what your use of antibiotics was after the IVIG? Periodic or continual, and half or full-strength?

Thanks--

Link to post
Share on other sites

Amy: I totally understand where you are coming from. I look forward to the day when I am only checking in on the forum to give long term updates.

 

I was thinking that it would be nice to tag people's success stories at six months and one year post IVIG or plasma exchange at the top of the page under Helpful Threads. Include: History, length of illness, treatment, antibiotic strength and treating Dr. Each individual can always edit as time goes on.

 

Just something for people to read when they are in the thick of things trying to determine which treatment and Dr. is best for their child. AND, more importantly, positive outcomes that provide hope.

 

-Wendy

 

 

 

 

 

Amy- thank you! That is really helpful. Did you get the ivig with Dr K- or at his dosage? Was it one time?

 

She had the standard 2 day IVIg at Dr. K's dosage. Only required that once.

 

Regarding coming and posting updates here....

 

I come to this site almost every day, several times. I wish I didn't. I am suffering from PTSD from our experiences and I really feel like I personally am doing better if I miss a few days. I do try to post updates when it seems appropriate though. Also, to be honest there are times that our experiences just don't match the conversations and so I find it strange to post at times. I am always thinking of these kids and families on this site and wondering how they are doing. I would love to meet up with some of you in Chicago if anyone is going to the Autism One conference, let me know!

Link to post
Share on other sites
Amy: I totally understand where you are coming from. I look forward to the day when I am only checking in on the forum to give long term updates.

 

I was thinking that it would be nice to tag people's success stories at six months and one year post IVIG or plasma exchange at the top of the page under Helpful Threads. Include: History, length of illness, treatment, antibiotic strength and treating Dr. Each individual can always edit as time goes on.

 

Just something for people to read when they are in the thick of things trying to determine which treatment and Dr. is best for their child. AND, more importantly, positive outcomes that provide hope.

 

-Wendy

 

 

 

:wacko:

 

http://www.latitudes.org/forums/index.php?...st=0#entry44482

Link to post
Share on other sites

Faith,

 

I obviously completely forgot about this..... should it be linked to the top?

 

 

Amy: I totally understand where you are coming from. I look forward to the day when I am only checking in on the forum to give long term updates.

 

I was thinking that it would be nice to tag people's success stories at six months and one year post IVIG or plasma exchange at the top of the page under Helpful Threads. Include: History, length of illness, treatment, antibiotic strength and treating Dr. Each individual can always edit as time goes on.

 

Just something for people to read when they are in the thick of things trying to determine which treatment and Dr. is best for their child. AND, more importantly, positive outcomes that provide hope.

 

-Wendy

 

 

 

:wacko:

 

http://www.latitudes.org/forums/index.php?...st=0#entry44482

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...