Jump to content
ACN Latitudes Forums

IVIG after PEX


Recommended Posts

Hi everyone, I have not been posting much lately, though I still check in almost day to see how everyone is doing.

 

My son had PEX in October (through Dr. Latimer), and started monthly IVIG through Dr. B earlier this month.

 

He was in pretty good shape before the IVIG-- I've kept him pretty calm and isolated since the PEX-- we were doing IVIG because I'm convinced it will all come back unless we fix the underlying immune dysfunction, I'd like him to possibly go back to school eventually, etc.

 

Anyway the IVIG definitely made him worse!

 

Day one-- bedridden with a terrible headache.

Day two-- many key symptoms were BACK with a vengeance, including clinginess to me, inability to play with friends, anger toward his stepdad, tackling the baby. It was so weird! (The chorea, which for my son was big swooping arm motions, did not come back.)

 

I decided not to panic, because of all the "turning back of pages" stories I have read here and the bizarre flaring of symptoms that follows IVIG. (I decided to even see it as evidence that the IVIG was doing something and that (as though we needed more evidence) this was indeed PANDAS.)

 

Sure enough, a week later he was back to me again, thank god!... (Though I still notice some little things, I am pretty hopeful that they too will flare and fade.)

 

I just wanted to add that this still seems to happen even when PEX has brought a kid back close to baseline, though it was much less severe than what some of you experienced-- I don't want the parents currently pursuing IVIG after PEX to be alarmed when they see their kids get worse again.

Link to comment
Share on other sites

Hi!

Yeah, he did a complete immuno workup... failed 13/16 pnuemoccocal titers and also iGg deficient (deficient in iGg1 and IGg4 and total #), which is how we got the IVIG approved.

 

I asked him to do the same workup for me, because I'm one who also believes I had PANDAS... and interestingly I also failed 13/16 pneumoccoal titers and my iGg was at the very very bottom of the normal range.

 

Dr. B and the people in his office are very very nice!

Link to comment
Share on other sites

Bronxmom, thanks for sharing this. My son also had plasmapherisis through Dr. Latimer in October, and we are in the process of waiting on insurance approval to begin monthly IVIG with Dr. B. very soon. Do you mind my asking the dose that they used for IVIG? Did they pretreat with Tylenol or Motrin? Glad to hear he is doing better now. Are you seeing any improvements since before IVIG yet?

 

Ellen

 

Hi everyone, I have not been posting much lately, though I still check in almost day to see how everyone is doing.

 

My son had PEX in October (through Dr. Latimer), and started monthly IVIG through Dr. B earlier this month.

 

He was in pretty good shape before the IVIG-- I've kept him pretty calm and isolated since the PEX-- we were doing IVIG because I'm convinced it will all come back unless we fix the underlying immune dysfunction, I'd like him to possibly go back to school eventually, etc.

 

Anyway the IVIG definitely made him worse!

 

Day one-- bedridden with a terrible headache.

Day two-- many key symptoms were BACK with a vengeance, including clinginess to me, inability to play with friends, anger toward his stepdad, tackling the baby. It was so weird! (The chorea, which for my son was big swooping arm motions, did not come back.)

 

I decided not to panic, because of all the "turning back of pages" stories I have read here and the bizarre flaring of symptoms that follows IVIG. (I decided to even see it as evidence that the IVIG was doing something and that (as though we needed more evidence) this was indeed PANDAS.)

 

Sure enough, a week later he was back to me again, thank god!... (Though I still notice some little things, I am pretty hopeful that they too will flare and fade.)

 

I just wanted to add that this still seems to happen even when PEX has brought a kid back close to baseline, though it was much less severe than what some of you experienced-- I don't want the parents currently pursuing IVIG after PEX to be alarmed when they see their kids get worse again.

Link to comment
Share on other sites

We have not had PEX but we just completed our third high dose IVIG two days ago with Dr. K.

 

What I can say about our experience is we see continued improvement with each treatment. Although, the couple days following IVIG are very strange in the fact that our son is on FAST FORWARD and could basically run a marathon. Its scary and you think WOW what just happened but they do continue to improve each day thereafter. In some areas, I would say our son is 120% improved over sudden on-set in June because we didn't realize he was sick prior to then. In other areas we are still attempting to get him back to 100% (one remaining TIC that has come and gone of a cough). The cough was the first symptom to appear a year prior to sudden on-set and will most likely be the last to abate. We have had many TIC free days but the cough continues to crop up. With each infusion you stir up the remaining bad antibodies as well as the good and perhaps why you saw the 'flair of symptoms' or 'turning of the pages'.

 

I will add that I am jealous of your treatment plan because with PEX you see immediate improvement and with the IVIG you rid the body of any potential infection, re-jump their immune system, eliminate any potential deposits in the BG and prevent them from additional illnesses. I think with IVIG only the recovery takes longer and that is hard on everyone. Dr. K has told me repeatedly it takes a full three months for the immune system to heal and full year for nerve damage to resolve.

 

I look forward to your updates of continued improvement!!!!!!

 

-Wendy

Link to comment
Share on other sites

I think he had 1gr/kg-- so 32gr total over about 4 hours.

 

They did give tylenol and benadryl beforehand.

 

The nurse who administers the IVIG is very very nice and very competent.

 

Also we met some of the great PANDAS parents and kids from this forum. It was almost... fun.

 

But no... I have not seen any overall improvement since IVIG, though he is back to where he was before.

 

I still believe I am addressing the underlying issues, which, as Wendy says below... it takes time.

Link to comment
Share on other sites

Thanks for the IVIG update. We did PEX this summer and were about 99% for 4 months until a relapse in Novemebr. We are almost back to baseline with steroids but are doing IVIG next Wed and Thursday to help "re-set" the system and clear out any remaining antibodies. I really do think in our case this is needed. I am prepared to see things get worse before they get better as any remaining antibodies are flushed out but I know it will be hard to watch. Please keep me posted on wehat you are seeing as time passes.

Link to comment
Share on other sites

  • 2 weeks later...

Just an update. We are 1 week post IVIG (post PEX) and we definitely see an increase in symtpoms but not unmanagable. His pupils remain dilated which I think is similar to SF mom's child, my guessnis the body's fight or flight response to the IVIG. I think a lot is going on in there. He sporadically is walking on his toes and seems more irritable and very untolerant of his younger brother. Last night he got mad at him for breathing too loud. He did say he felt more able to control his legs and movements some. He said, beofre IVIG I would have to move but now I can control them in class more. It makes me realize despite PEX he still needed the IVIG.

Link to comment
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...