Dr. K visit update. DS still raging 3 weeks now.

[qannie47]

Saw Dr. K today. He looked sincerely down hearted about the 3 week long relapse. Although he stayed optimistic. He said that it is not unusual for a long relapse. He said that we can still be optimistic about IVIG being a success and that while other relapses can occur, hopefully, in his experience, future relapses will get less intense and farther in between. (I did not remind him that this current episode was at bad as the first, if not worse in many ways, and all the ones in between were mild compared to this one, before the IVIG). He ordered 3 blood tests looking for infection. He changed and increased his abx to augmentin 500 2x a day for 14 days. He said that if this does not do the trick, he will do steroid burst...

 

I thought of some of you when he talked about the importance of ruling out any infection BEFORE DOING A STEROID BURST. He said, "If there is any infection in him, the steroid will make him worse".

[rowingmom]

Glad your Dr is still optimistic.

 

This is a great group. We learn so much from each other .

[Nick12]

Interesting to read that if there is an infection steroids will make it worse.

Augmentin created a nightmare for us... Worse than any Pandas episode. IViG went well, but the solumedrol afterwards has put us back to square one. Hoping something good comes our way.

[3bmom]

We experienced a lessening of rage when we removed all dairy. Never had a problem we could see with it between flares but it definitely helped. If you choose a soy milk just make sure it's organic so no GMO. Good luck. I think rage is the hardest.

[nicklemama]

My son was never able to hold recovery after IVIG with just the prophylactic augmentin. We also found he had the tick borne infections after IVIG # 2 and started treatment with an augmentin/biaxin combo. This is the best he's done since he got. He's not 100% but he's so much better. We've done the methylation supplementation for his mutations but treating the ehrlichia and anaplasma have had the most impact, along with adding enhansa. We're a long way from the end of treatment though. DS has had IVIG twice with Dr K.

[qannie47]

I find it highly disconcerting that when it comes to IVIG, many in this forum do not experience much relief. Or if success with 1st IVIG, it is not the same with 2nd or 3rd. Yet it is the touted

as the BIG treatment for Pandas, and the collaborative studies show great success...yet in real life, I am not seeing this.

[PowPow]

I find it highly disconcerting that when it comes to IVIG, many in this forum do not experience much relief. Or if success with 1st IVIG, it is not the same with 2nd or 3rd. Yet it is the touted

as the BIG treatment for Pandas, and the collaborative studies show great success...yet in real life, I am not seeing this.

I completely agree and have wonderd the same thing. Perhaps it only works quickly for clearcut strep pandas, like the study requires.

It is a bit misleading and disheartening, isnt't it?

Edited October 8, 2013 by PowPow

[LNN]

We only did 1 HD IVIG. It was horrible. The one good that came of it was that when he didn't "follow the script" and get better, it forced us to look for what else it could be (I'd always dismissed lyme b/c he was so clear cut Pandas with sudden onset after strep). After IVIG, he tested positive for lyme and that - finally - put us on a path toward healing (pyrroulria and methylation also ended up being part of the answer).

 

I think IVIG has been great for some kids. But just like lyme isn't everyone's problem, IVIG isn't everyone's solution. There can be multiple causes of these symptoms and multiple paths to healing. Sucks that we have to be the ones who do all the sleuthing, but hang in there. Just because you feel you exhausted one avenue doesn't mean you'll be stuck forever. It just means you need to cast a wider net. The fact that he responded well initially tells you there's an inflammation piece. The fact that he's declining tells you you haven't found everything yet. But you will.

[nicklemama]

IVIG is not a cure. It has helped DS and we would do it again, if we got to that point again. It did things abx alone did not. However, it will not keep your child from getting subsequent infections and exacerbating all over again. Perhaps because DS had underlying infections that were never treated he could not maintain. I do find at amazing to read reports from parents that their child was back 100% in a few days or weeks after IVIG. That has not been the case for our son. It has always been a slow recovery with a lot of ups and downs before things slowly got a lot better. We will try many other things before we do IVIG again, though. Steroids and t&a are on that list.