When to move on from ABX to IVIG

[MaggiesMoons]

Will make a long story short and to the point:

 

Ds now 9-- 2012

Pandas started at age 7 1/2 --Jan 2011

Diagnosed PANS October 2011

ABX started Dec 2011 and still ongoing at full strength of 500 mg daily Azithro. So ABX full strength for 8 months

 

Can only seem to sustain 4- months no exacerbation if no exposures.

 

Reacts to: Strep, strep in others, mono, and most recently noticed seasonal Allergies. Could be more, but this is the battle field thus far.

 

While reaction to the illnesses has been minor PANDAS flares of 4-5 days or less then back down, this is due to him being on ABX since dec 2011

He has been symptom free for a solid 4-5 months: No ocd, or Tics! NOTHING---he was 100%~

 

Most recently....July 2, 2012 saw a HUGE exacerbation! Just as intense as the very first one! Literally brought us back to square one or so it feels! It is also the EXACT SAME time as his second episode (the one that lead me to PANS) as last year! Ocd, fears, anxiety, tics....the whole gang is back!

I am almost certain this is due to seasonal allergies! As mine were pretty intense as well. We had made a trip out of state, but no one was sick. Tested family for strep-Negative.Son tested negative on rapid-waiting on culture to come back. Dr M ran more blood work--waiting on those results as well

 

He is on ABX as stated above, not much help seeming to come of it now.

Advil (ibuprofen) used to be a HUGE help, not much help now from that either for the tics etc.

 

At this point I am afraid that the ABX may not be enough. It allowed a full blown flare to rage for 4 weeks plus, just now starting to see a minor reduction in symptoms, but tics are still there, as well some new things I think I may be seeing (not sure---still observing).

 

At what point after doing the ABX protocol do you opt for more intensive treatment like IVIG????

I am at the point where I can't just sit here and wait to see when the next major flare is gonna catapult us back to page one again.

Because I am scared, and my heart is broken because I thought we had made it so to speak to at least only minor flares I want input from others who may be able to offer their experience or knowledge!

I don't want to wait too long before we get more aggressive, but I don't want to rush the treatment either. Is this a normal scenario with a major flare after doing so well for 8 months?

 

A leading doc says IVIG is the "heavy hitter" and should be reserved. I feel if IVIG helps the very severe then why not give to the milder cases and STOP it sooner? Why wait until they become the "Severe" case and the damage is done!?

 

Any help out there??? I am at a crossroads but need input from others who have been there.

[kos_mom]

I am so sorry to hear about son. We did not get a chance to do IVIG for my DS--he is now 22, but his first big outbreak was in 1998 when no one could help, even with long term ABX because that was not known as a treatment then. In fact, no one could tell me what was wrong. He eventually got better, but he suffered a much worse outbreak two years later. I would have done IVIG in a heart beat had it been available. And looking back over the years, I think how much better a childhood he could have had with propoer treatment. It came back while he was in college and I have finally got him to a specialist (Dr. L), so I am hoping we can get to a place where he no longer needs to worry about this. If Dr. l suggests IVIG, we'll be at the hospital to do it the next day.

 

I may be inferring too much, but you seem to be questioning whether your DS is severe enough to "deserve" IVIG. Yes, there are kids so bad they cannot get out of bed and maybe your DS is more functional than that. But he has OCD, anxiety, phobias, and tics. Having had to go through this with very little medical help a long time ago, I can tell you the long-term consequences of chronic if not extremely severe PANDAS are very challenging for both the child and his family. You really don't want to have put up with them if you can avoid it.

 

Definitely go for the IVIG in my view.

[tpotter]

If you think IVIG may help your child, then I would suggest seeing someone like Dr. B, who will do all kinds of immunological testing. It is possible that your DS may have an immune deficiency.

 

On the other hand, I want you to keep in mind that IVIG does not cure the child. It helped my children immensely (took the edge off, and I believe my children are way, way better as a result, but despite multiple IVIG treatments, they are not cured, and still have flares.)

 

But, that being said, we are still treating for lyme, co-infections, viruses, etc, and I now am convinced there may not be a total cure. We still get flareups when my kids are exposed (DS ended up at the ER 2 weeks ago because of probable strep, and that was a joke...I ended up taking matters into my own hands!)

 

OK, that being said, I know it may sound like I'm vacillating, but I want you to be aware, that before you try IVIG, that you understand it's not a cure. Yes, it helped my children, and no I am not the least bit sorry I went that route (and they also both had PEX at their worst), but I also now understand that I don't think that more IVIG or PEX (at this point for them) is going to make a difference, and that the best attack is to continue with abx, supplements, chiropractics, acupuncture, and other alternative therapies.

 

But, again, I won't try to dissuade you from IVIG, because only you know what may be best for your child. And for that, I would suggest you consider making an appointment with Dr. B, as he can look at the total immunological picture on this one.

[dcmom]

I think it would make sense to consider a steroid burst prior to trying IVIG.....

[LNN]

My son could not sustain remission either. We ended up finding two additional and very significant issues - lyme and pyroluria (a genetic zinc/B6 deficiency). We found these additional issues after one HD IVIG that was a horrible experience. Agree with TPotter that IVIG (and Pex for that matter) can help strengthen the body and stop a current episode. But the research (as well as parent experiences) suggests that it is a therapeutic treatment and not a cure.

 

If you feel your son would benefit, then certainly look into it. But I wouldn't do it with the belief that it will cure and prevent future episodes (tho future episodes may be milder). If you're seeing a recurring pattern, it makes me want to suggest looking at other sources of infection and/or foundational issues like nutritional deficiencies, methylation, detox, biofilms, oxidative stress...these things tend to prevent permanent healing.

[Nearlydoc]

See the new comments on the OCD conference a couple of threads back to see some notes regarding Dr. Swedo's comments about allergies. She recommends H1 and H2 treatments.

 

 

Your comments are good. We are in a similar place. Our dd7 has had PANDAS for 4 years with most of the symptoms but no tics or tourettes, but only started treatment in Feb. We have just switched to Zith which seems to make a difference.