Jump to content
ACN Latitudes Forums

questions about booster IVIg


Recommended Posts

We are in the process of trying to decide about a booster IVIg with Dr. K. I will be sending an email to the doctor but wanted to post here too because I value y'all's experience so much! We are at 14-months post-IVIg, and my son (almost 8) is doing very well. Some symptoms remain, and we've been told if he's less than 90% to consider a booster IVIg. This is tricky since he likely had early onset PANDAS, so what the bleep does 100% look like? Also, I found out this morning that he's been twisting & pulling out his hair (went thru this last spring with a myco p infection/high IgG & Biaxin fixed it). Plus he's had a loose tooth for about a month that is likely part of the issue. As far as the booster IVIg, I'm wondering:

 

Is it 1-day of HD IVIg or different dosage?

 

Do you go thru the whole thing of trying to be sure they don't get sick for 3 months like with a regular IVIg?

 

Are you likely to see a recurrence of old symptoms during recovery from the procedure?

 

How do you determine 90% recovered? I'd estimated at 85-90%, but I'm really guessing.

 

Is there a time limit? Meaning, after a certain point do you have to do a regular IVIg vs a booster?

 

Is there anything else I should know that I'm forgetting to ask? ;)

 

Thank you!

Link to post
Share on other sites

Answered your questions in order...

 

Dr k just calls it a 'booster' when it is really just another 2 day 1.5 kg dose.

I would think you have to be on guard after IVIG but not sure about 3 months

You may see old. We saw things we hadn't seen in a few years.

I have no idea how to rate this recovery as our son was early onset too.

I don't know. I wish I had answers. Dr k says only a few are needed and that multiple IVIG's (especially lower than 1.5kg) circulate immune complexes.

DS lost 3 teeth in 3 months. Right around the time he had 2nd drk dose.

 

Wish I had more answers. Our son is doing well but I can only guess that he's about 65%?????

Have you been upping abx when he starts to show signs of exacerbation?

 

Ann

 

We are in the process of trying to decide about a booster IVIg with Dr. K. I will be sending an email to the doctor but wanted to post here too because I value y'all's experience so much! We are at 14-months post-IVIg, and my son (almost 8) is doing very well. Some symptoms remain, and we've been told if he's less than 90% to consider a booster IVIg. This is tricky since he likely had early onset PANDAS, so what the bleep does 100% look like? Also, I found out this morning that he's been twisting & pulling out his hair (went thru this last spring with a myco p infection/high IgG & Biaxin fixed it). Plus he's had a loose tooth for about a month that is likely part of the issue. As far as the booster IVIg, I'm wondering:

 

Is it 1-day of HD IVIg or different dosage?

 

Do you go thru the whole thing of trying to be sure they don't get sick for 3 months like with a regular IVIg?

 

Are you likely to see a recurrence of old symptoms during recovery from the procedure?

 

How do you determine 90% recovered? I'd estimated at 85-90%, but I'm really guessing.

 

Is there a time limit? Meaning, after a certain point do you have to do a regular IVIg vs a booster?

 

Is there anything else I should know that I'm forgetting to ask? ;)

 

Thank you!

Edited by Johnsmom
Link to post
Share on other sites

Thanks Ann!!!

 

We have been switching to Biaxin when we've seen increased symptoms. We did that twice last year. Tested one time and had high myco p IgG & used the Biaxin rx'd by K to kick it. 2nd time I didn't bother testing and our local ped gave me the Biaxin.

 

Interesting that a booster is another full 2-day dose. And disheartening that we could see a resurrection of old symptoms. Overall, we are still in a good place, but things are creeping back but aren't constant. Very likely it's that frickin' loose tooth doing a lot of it. I gotta get that thing outta there. I'm going to do at least 2 weeks of Biaxin for now...maybe longer. Run some labs (strep titers, myco p, ?). Then we will just go from there. Sigh.

 

I am not as nervous to do a 2nd IVIg as I was on the 1st one (tho' we really didn't have anything else we could do then since abx weren't abating the symptoms). I just don't wanna undo any good we have by doing another procedure. And if I can keep him from going thru it, then that would be good. But we will do what we have to do. And insurance covered the last one, so I am assuming they would cover this one...and if they don't, we have a precedent to say "well you covered it before!".

 

P.S. I hate PANDAS!

Link to post
Share on other sites

Dr K seems very careful not to rock the boat. I would follow his advice if he suggests the 'booster.' DS was not affected by side effects the 2nd time around so maybe your son will be okay.

 

And yes... PANDAS sucks!!!

 

ANN :angry:

 

Thanks Ann!!!

 

We have been switching to Biaxin when we've seen increased symptoms. We did that twice last year. Tested one time and had high myco p IgG & used the Biaxin rx'd by K to kick it. 2nd time I didn't bother testing and our local ped gave me the Biaxin.

 

Interesting that a booster is another full 2-day dose. And disheartening that we could see a resurrection of old symptoms. Overall, we are still in a good place, but things are creeping back but aren't constant. Very likely it's that frickin' loose tooth doing a lot of it. I gotta get that thing outta there. I'm going to do at least 2 weeks of Biaxin for now...maybe longer. Run some labs (strep titers, myco p, ?). Then we will just go from there. Sigh.

 

I am not as nervous to do a 2nd IVIg as I was on the 1st one (tho' we really didn't have anything else we could do then since abx weren't abating the symptoms). I just don't wanna undo any good we have by doing another procedure. And if I can keep him from going thru it, then that would be good. But we will do what we have to do. And insurance covered the last one, so I am assuming they would cover this one...and if they don't, we have a precedent to say "well you covered it before!".

 

P.S. I hate PANDAS!

Link to post
Share on other sites

Have you been tracking your son's IgG level over time?

 

We switched to Doryx and things are improving for my son. We did a "booster" (really, its just a second IVIG) after about 7 months because DS was PITAND, and with every little sniffle I could see him slide backwards instead of moving in the other direction. There was no way I was going to let things get as bad as before our first IVIG. So, we did a 2nd. It help the back sliding, and we saw some improvement, but not nearly as dramatic as the first. It go him to around the same place - 90% better.

 

 

After retesting myco IgG and still seeing it was still rising, despite 500mg of Azith/day and 2 IVIG's. switched to Doxycycline (Doryx) Things have started to improve on this. The biggest being - he hasn't reacted when he got a cold a few weeks ago, and I've seen a couple minor things getting better (in the middle of cold/flu season - so I'm taking this as a very positive reaction to new antibiotics). DS is also on tindamax, which I think makes him a bit angry irritible and rage-y . Tindamax is bcs I've decided to treat for Lyme, since the myco P was never cleared from by his own immune system, and it is a common lyme co-infection (and because I test positive and DS is boarderline IMO).

 

So far its working - but there may come a point where it doesn't anymore. The Azith also worked for the first 2-3 months, and he got much better on it, but then he got a couple colds and those gains were quickly lost and I don't think the Azith was doing much in terms of fighting the mycoP. It probably did have some positive effects on him due to anti-inflamatory properties, and immune modulation which I could see if we went off for a few days (could have been my paranoia too).

 

Hopeful this is the right antibiotic for him. I will keep him on it for 6 months or so since what I've read about the failure rate for chronic mycoplasma with shorter term is very high.

 

I'm hoping to get DS off the tindamax next drs appointment. Its a Lyme cyst-buster. Also doing immune system support - a product called A-myco that is an herbal tincture, and vitamins.

 

DS reacted HORRIBLY to both IVIGs migrains and nausea for 10 days following the second IVIG ( and this with me giving advil every 4 hours). SCARY BAD.

 

If I had to do over, I would have tested myco before 2nd IVIG, and would have seen it was a big issue. I'd have made sure titers were in normal range before 2nd IVIG.

Link to post
Share on other sites

Norcalmom...I have not been testing myco p levels. I do plan to request that lab from the ped. (I'm going to get strep titers too even tho' ds's don't rise.) I used Biaxin to treat myco p last spring (with labs/high IgG) and again in the summer (no labs...assumption). Otherwise we use daily zith. It's hard for me to know right now if it's an exposure, illness, or that frickin' loose tooth. I started the Biaxin on Wed, and Thurs seemed better. Our appt with the ped is today. I should do a Lyme test prior to another IVIg since I know myco p is/has been there & there's such a high rate of co-infection. Need to do the Lyme & myco p tests for myself too. Sigh.

 

Norcalmom...who is handling the meds for the myco p? Your ped or are your seeing an LLMD or another specialist? I'm hopeful you found the right abx too!

 

Thank you very much for your help/support.

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...