How long after diagnosis did you do IVIG

[Dedee]

This is my third child with PANDAS symptoms. My second son has never needed treatment because his symptoms have been so mild. My first son unfortunately waited a while because we didn't know what we were dealing with for a while. So now we are on child # 3. She is a real challenge due to the barrier of not being able to get her to take any medications or supplements. Her bicillin injection two weeks ago has given mild relief. I'm sure you can all understand how hard this is on the entire family dealing with the rages and defiance on a daily basis. I really don't believe this is lyme because of the family connection of PANDAS with her brothers. My oldest son has done so well after he finally got appropriate treatment for his PANDAS but my daughter must get to a place where she can trust taking medications and supplements before we can work along that avenue. So am I wrong to be thinking about IVIG already? She is only seven so I don't really see the need to be conservative. We have a long road and I prefer to try to get this under control early rather than playing around for months hoping she will come around and do something she isn't going to do. Understand please, I am not over exagerating the medication thing. It's like saying I can control her rages if I was a better parent. I can not, no matter what I say or do, get her to take this stuff. I have mixed it in food and drinks without her knowledge but still cant get the amounts and frequency that she should be getting of these supplements. So I am ready to move to the next step. I'm sure you all can tell the frustration in my post. I really need to hear suggestions, opinions, and / or personal experiences. Thanks so much.

 

Dedee

Edited February 15, 2011 by Dedee

[SSS]

Not sure I'm qualified to answer this, but, we got official Dx 3 months ago- but my dd5 has a strep timeline from an infant exposed to active strep in daycare, followed by a jump off the growth chart for head growth, up to hospital for unexplained fevers that never got figured out- and then a documented strep infection at a little > 2 yrs. old- things went rapidly downhill after that- she has been untreated for years. Her CamK is 175.

We have done immune testing, etc.

So far we've been on:

Omnicef (no real impact at all)

Augmentin SR (hated it!)

Azithromycin

 

Azith. is the winner, we've had Wows! with it, but cannot get her to a baseline- ibuprofen has a large impact on her-

We are doing a 4 day steroid this weekend for the 1st time(she's off school for 4 days)

 

I have looked/researched IVIG hard. Depending on what the streoid brings, I believe it is our next step. And soon.

From what I've learned so far, every child's path is different here-

[butterflymom]

=

Edited February 3, 2016 by butterflymom

[SarahJane]

We did IVIg one month after formal dx. I had dx'd it myself for son by then as this was a 2nd strep exacerbation. Had found PANDAS during the 1st strep exacerbation about 3 months into it, but local dr didn't think that was it. Didn't think it was PANDAS with the 2nd exacerbation either, but now she's our ex-dr. The 2nd exacerbation (Sept '10) was a lot worse than the 1st (Jan '10) & mostly debilitated him (and us) with the strange symptoms (OCD, rages, age regression, tantrums, insomnia, vocal tics, ADHD, etc...). During the 1st one, he was still functioning & going to school (was in trouble all the time tho' since we were undx'd). We are 3 months post-IVIg, & it did wonders for our now 7-yr-old (bday was this past Sat). Still more healing to come (some lingering issues), but he's in a much better place than he was back in Nov when we did the treatment. Just know that even with IVIg, your dd would be on abx for a year...so she'll still need to learn to take meds.

 

All that said, I do think we had early onset, but it's impossible to pinpoint when it hit. He was exposed to strep just before he turned 2, but it was after his 1st ear infection at 2.5 that drs started questioning ASD possibilities. (No dx...not autistic.) We just had glitches along the way during toddlerhood, but they would clear up & leave us feeling like we were crazy. After having tonsils out, we had 1.5 years of hardly any illness. Strep brought a MAJOR change in behavior one month later, which lingered for 4 months & starting getting a bit better just in time to get strep again.

 

Good luck making your decision.

[SSS]

Just to quickly add, didn't make clear in my previous post:

My dd5 is also REALLY suffering. I would never go so fast so drastic if it wasn't the case (duh, like all of us here)

And she has been suffering for a long, long time :-(

I can see us doing IVIG as quick as next month.

Have dicussed it at length with our Dr.

[Dedee]

Sarah Jane and others - who did you use to get your IVIG? I am hoping that if she had IVIG it might help with the paranoia over medications at least maybe we could reason with her better if she was in a better place in her thinking.

 

Dedee

[SarahJane]

Dr K.

 

Yes, I didn't think about the med paranoia being PANDAS. You're probably right. DS is on zithromax for a year. (Tho' the IV is going to be stressful. Was for our son too...think it is in general. We thought they were gonna have to sedate him to get it in there, but Dr. K & 2 nurses were able to get it done. After that, it was no big deal, & they leave the HepLock in overnight so you don't have to go thru it twice.)

[SSS]

May I please ask:

are you on prevenative dose of Azith. after IVIG- 1x or 2x a week?

Or are you on treatment dose for the year, every day?

Thank you,

Sarah

[SarahJane]

Right now we are daily zith at 250mg. We may go to every other day eventually, but ds seems to do well with daily. I owe Dr. K an update, so we'll see what he says (he mentioned we may consider every other day at 12 weeks). I'm cool keeping it every day & actually prefer it for peace of mind. (IVIg is stressful as far as hoping it will work & avoiding any exposure to any illnesses/infections.) We do a probiotic too, but I'm not sure we need it (not hurting tho'). He's also on a multi-vitamin & fish oil.

[Debbie1]

Dedee,

 

I have two children with pandas, both of whom went undiagnosed for several years. When we finally got the pandas diagnosis (and were told that our children are textbook cases), our initial doctors were not very aggressive. We ultimately switched doctors and after trying several different antibiotics and a course of steroids, we opted for IVIG. It has not been a miracle cure for us, but my children have improved tremendously. My son has had 3 rounds, my daughter has had two. They are each scheduled for another round in the coming weeks.

 

I have a lot of anger toward those early docs we saw who either did not correctly diagnose my kids or who diagnosed correctly, but refused to consider IVIG. I really believe it would have saved us much pain and heartache had we done it earlier. I have two other children and if, God forbid, either of them would start to show signs of pandas, I would get them on antibiotics and schedule IVIG as quickly as possible.

 

We have a very long history, and I tried to keep it brief here, but feel free to ask any questions you may have about our experience.

 

Debbie

[Dedee]

You all make me feel better about IVIG. I don't want to rush into it, but like Debbie, I have seen the affects on my son and don't want to wait around to see what other damage could be done. I just wonder if the doctors will feel the same way. Going next week to ask for a steriod injection so we can see how she reacts to that. They said the rest of her labs should be back by then. Her appt is next Thursday. Hope we can wait that long. Last night was another rough night.

 

Trying to stay strong - Dedee

[EAMom]

We did our first IVIG 1.5 years after diagnosis. I wish we had done it sooner...but it was hard to know at that time that abs alone wasn't going to be adequate. Once we did IVIG, we realized it wasn't a big deal.

[amyjoy]

It took us a year before we were able to treat my son with ivig. he had already had pandas for at least 4 years by the time he was diagnosed. we went through months of antibiotics and they just didn't help enough, his suffering - our suffering- was profound. It took months for us to pull the funds together, and each day while we were waiting felt like eternity, i can hardly believe we even survived those days. fortunately the ivig has helped tremendously so far.

 

so i just think, that if you are there in your mind, at ivig - just go for it. Especially with everything you've been through with your other kids, you have a feel for it, and just have to trust that.