Is it true IVIG only lasts 30 days?

[melanie]

Good Morning,

 

Is it true IVIG only lasts 30 days,Thats what the infectious disease md said. Thats why danny is backsliding so much , Is this true ? Would monthy ivs be or eork the same?I think Im going to do the phone consult with dr k.

 

Melanie

[greeneyes48072]

Dr. K told us 12 weeks. I think the 30 day thing is for people who get IVIG because they have no IG's at all of their own. I also read somewhere that anyone getting IVIG for any reason cannot get vaccinated within 6 months, so it may still have some effects that last that long...hope that helps a little...We are at the 4 month mark, and I emailed Dr. K friday to ask what to do next, since he's still having bad tics...still awaiting a reply...I'm guessing he may be out of country...

[melanie]

Dr. K told us 12 weeks. I think the 30 day thing is for people who get IVIG because they have no IG's at all of their own. I also read somewhere that anyone getting IVIG for any reason cannot get vaccinated within 6 months, so it may still have some effects that last that long...hope that helps a little...We are at the 4 month mark, and I emailed Dr. K friday to ask what to do next, since he's still having bad tics...still awaiting a reply...I'm guessing he may be out of country...

 

 

I spoke with dr ks office today.I set up an appointment for next weds at 5pm my time .$350 OMG anyones insurance cover his Phone consult?Danny had a huge rage attack at school today.Im stressed!!Happy then unhappy .I do notice hes very hungry today.Hes 135 lbs and 5'8".School said as rageful as he was this am he was as sweet and calm in the pm.I love it when school asks if anythings different at home ?Like if were doing something ?

 

Melanie

[bubbasmom]

That's usually when I just start giving the school CRAP. Tell them, no nothings new at home, we're still doing CRACK like usual, we still beat our kids on a regular basis, and the fact that we feed him dog food and make him sleep outside - NOTHINGS NEW! They're a bunch of Crack Heads! On my sons first day of kindergarten he pitched a major fit. Seriously, the principal called me and asked me if I abuse my child or if he's on prescription medication that's out of whack!

I've lost so much faith in the school system, if your child's behavior doesn't fit into their little box, then the parents are doing something wrong! DON'T GET ME STARTED!

I'm so sorry you're going through that. My son is in 7th grade now. He's 5'2" weighs 130. I'm sure like your child, when he throws a fit, its like an adult throwing a fit. My peditrician did give us Rispadryl (spell) this time and it has been a life saver! Unfortunately got a letter from United Health Care telling me it's no longer covered. But it's for rage. My son loves it because it helps him stay in control. Start at .25 mg twice a day, no luck but got him up to 1 full mg twice a day and we're in business.

Also, Dr. K JUST EMAILED ME today that IVIG is a PERMANENT FIX! So many rumors. I'll post a copy of it next.

 

No I am from Croatia.

Hopefully ONE IVIG should be enough.

dr. K

 

In a message dated 10/19/2009 9:20:45 A.M. Central Daylight Time, dkriese@sbcglobal.net writes:

I have one more question for you, Grant is scheduled for his first IVIG on Wednesday at a hemotologist's office at St. John's Hospital here in St. Louis.

If and when the IVIG works - is this a permanent fix or is this a fix just until the next time he gets strep or whatever?

Dr. K told us 12 weeks. I think the 30 day thing is for people who get IVIG because they have no IG's at all of their own. I also read somewhere that anyone getting IVIG for any reason cannot get vaccinated within 6 months, so it may still have some effects that last that long...hope that helps a little...We are at the 4 month mark, and I emailed Dr. K friday to ask what to do next, since he's still having bad tics...still awaiting a reply...I'm guessing he may be out of country...

 

 

I spoke with dr ks office today.I set up an appointment for next weds at 5pm my time .$350 OMG anyones insurance cover his Phone consult?Danny had a huge rage attack at school today.Im stressed!!Happy then unhappy .I do notice hes very hungry today.Hes 135 lbs and 5'8".School said as rageful as he was this am he was as sweet and calm in the pm.I love it when school asks if anythings different at home ?Like if were doing something ?

 

Melanie

[EAMom]

For most PANDAS kids, 1 IVIG is enough...but it is critical to prevent another strep infection (long term anti-biotics) which could re-ignite PANDAS. We plan on keeping our dd on antibiotics until she is 18 (at the minimum)...hopefully by then (in 9 years) we will have more information on how then to proceed.

 

My theory (excuse me if this is wrong)....For most auto-immune dz's, you need to give IVIG monthly b/c the "trigger" or the "problem" is still there (b/c the body is reacting to itself). For PANDAS, the "trigger" is strep. So, if strep is gone from your child's body (and strep is not hiding out in the body even in small amounts ) then the IVIG seems to "re-set" to immune system and further IVIG's are not needed. However, it is possible, with enough immune stimulation (strep infection/exposure/possibly other infections) that the PANDAS can be "re-triggered" and another IVIG will be needed. This is why continuing abs is critical, IMO.

 

Swedo has said it's not really known how long these kids need to stay on abs. She used rheumatic fever as an example. They keep upping the age, 18 then 21, then 25...

 

If a child has other issues (eg. immune deficiencies) that is another example of where more than 1 IVIG may be needed.

[melanie]

That's usually when I just start giving the school CRAP. Tell them, no nothings new at home, we're still doing CRACK like usual, we still beat our kids on a regular basis, and the fact that we feed him dog food and make him sleep outside - NOTHINGS NEW! They're a bunch of Crack Heads! On my sons first day of kindergarten he pitched a major fit. Seriously, the principal called me and asked me if I abuse my child or if he's on prescription medication that's out of whack!

I've lost so much faith in the school system, if your child's behavior doesn't fit into their little box, then the parents are doing something wrong! DON'T GET ME STARTED!

I'm so sorry you're going through that. My son is in 7th grade now. He's 5'2" weighs 130. I'm sure like your child, when he throws a fit, its like an adult throwing a fit. My peditrician did give us Rispadryl (spell) this time and it has been a life saver! Unfortunately got a letter from United Health Care telling me it's no longer covered. But it's for rage. My son loves it because it helps him stay in control. Start at .25 mg twice a day, no luck but got him up to 1 full mg twice a day and we're in business.

Also, Dr. K JUST EMAILED ME today that IVIG is a PERMANENT FIX! So many rumors. I'll post a copy of it next.

 

No I am from Croatia.

Hopefully ONE IVIG should be enough.

dr. K

 

In a message dated 10/19/2009 9:20:45 A.M. Central Daylight Time, dkriese@sbcglobal.net writes:

I have one more question for you, Grant is scheduled for his first IVIG on Wednesday at a hemotologist's office at St. John's Hospital here in St. Louis.

If and when the IVIG works - is this a permanent fix or is this a fix just until the next time he gets strep or whatever?

Dr. K told us 12 weeks. I think the 30 day thing is for people who get IVIG because they have no IG's at all of their own. I also read somewhere that anyone getting IVIG for any reason cannot get vaccinated within 6 months, so it may still have some effects that last that long...hope that helps a little...We are at the 4 month mark, and I emailed Dr. K friday to ask what to do next, since he's still having bad tics...still awaiting a reply...I'm guessing he may be out of country...

 

 

I spoke with dr ks office today.I set up an appointment for next weds at 5pm my time .$350 OMG anyones insurance cover his Phone consult?Danny had a huge rage attack at school today.Im stressed!!Happy then unhappy .I do notice hes very hungry today.Hes 135 lbs and 5'8".School said as rageful as he was this am he was as sweet and calm in the pm.I love it when school asks if anythings different at home ?Like if were doing something ?

 

Melanie

 

 

 

Thats hysterical!! So why does dannys md say it only lasts 30 days?Did you do a phone consult.Did your insurance cover it ? Dannys on risperadal 1mg per day It really worked when we started it in june .Only really worked for about 1 month .Hes stilll on it probably needs more but I think his foot twisting is a tic he got after he was on it .He had IV and was tic free for 2 weeks I want more IV!!!

 

melanie

[/quote

[pixiesdaddy]

The "IVIG only lasts 30 days" thing is a reference to the fact that the antibodies introduced into your body by IVIG die off after 30 days. Assuming there's no other underlying immune condition, hopefully the child's body's ability to produce its own antibodies has been jumpstarted by the original infusion, so when the IVIG antibodies die off, the body is now producing its own.

 

Or at least that's how it was explained to me.

 

Pixiesdaddy

[bubbasmom]

You guys seem to know more about this IVIG thing than I do. My problem is, so many people insurance does not cover this. How do people afford to do this once a month? And if it is just a 30 treatment, why does Dr. K insist that this is a cure?

I'M CONFUSED!

My son was scheduled for his first IVIG tomorrow, but of course there's all kinds of complications with my insurance. The medicine itself is $8,000 plus the doctors fee and facility fee. CRAZINESS!

 

The "IVIG only lasts 30 days" thing is a reference to the fact that the antibodies introduced into your body by IVIG die off after 30 days. Assuming there's no other underlying immune condition, hopefully the child's body's ability to produce its own antibodies has been jumpstarted by the original infusion, so when the IVIG antibodies die off, the body is now producing its own.

 

Or at least that's how it was explained to me.

 

Pixiesdaddy

[EAMom]

Here's thread on insurance codes http://www.latitudes.org/forums/index.php?...insurance+codes For many insurances, it is helpful to have your doctor put down something other than PANDAS for the diagnostic code (hey, PANDAS doesn't exist anyway! )

 

I understand United Health care covers PANDAS....peglem had a post on that.

[peglem]

Here's thread on insurance codes http://www.latitudes.org/forums/index.php?...insurance+codes For many insurances, it is helpful to have your doctor put down something other than PANDAS for the diagnostic code (hey, PANDAS doesn't exist anyway! )

 

I understand United Health care covers PANDAS....peglem had a post on that.

Just wanted to let you know that the document I linked for UHC coverage does have disclaimers attached regarding coverage and we are not far enough in the precess to see if actual coverage will take place, but the UHC documeent did say that IVIG has been PROVEN effective, specifically for PANDAS. This strikes me as odd in light of the fact that PANDAS is "contoversial" and most would say there is no Proven treatments, but there it is. I'll find and link the document again if you'd like. Another document from UHC on Apheresis (PEX falls into this category), sounds like this procedure is a lot harder to get approved and makes no mention of PANDAS.

[bubbasmom]

So today is the day I should find out about insurance covering this. We have UHC. I sent the office the clip that the other person posted on here for me showing that UHC not only acknowleges PANDAS but uses the word "PROVEN" in terms of IVIG treatment. Even thought they are the ones that worded it that way and wrote that on the policy, they are still making us jump throught hoops and send for pre-determination. So we'll see I guess.

 

Here's thread on insurance codes http://www.latitudes.org/forums/index.php?...insurance+codes For many insurances, it is helpful to have your doctor put down something other than PANDAS for the diagnostic code (hey, PANDAS doesn't exist anyway! )

 

I understand United Health care covers PANDAS....peglem had a post on that.

Just wanted to let you know that the document I linked for UHC coverage does have disclaimers attached regarding coverage and we are not far enough in the precess to see if actual coverage will take place, but the UHC documeent did say that IVIG has been PROVEN effective, specifically for PANDAS. This strikes me as odd in light of the fact that PANDAS is "contoversial" and most would say there is no Proven treatments, but there it is. I'll find and link the document again if you'd like. Another document from UHC on Apheresis (PEX falls into this category), sounds like this procedure is a lot harder to get approved and makes no mention of PANDAS.