IVIG cold feet

[Jaal]

Hi All

 

I had a phone consult with Dr K, and without seeing my DS6, he was certain he had Pandas and recommended IVIG. He also assured me that most likely (80%) he would only need one IVIG treatment.

I was ready to sign up but it seems that everyone on this board has had multiple sessions of IVIG. I have only read of 1 or 2 cases where the IVIG was performed once and had great results.

So naturally I am concerned that I am being conned...even though I know Dr. K is extremely reputable.

I would love to hear from anyone who has had IVIG performed (how many times they were told they would need to have it)....especially from those who had it performed only once and saw great improvement.

 

Thanks so much in advance for any insight that can help me make an informed decision!

[LNN]

Ok, I may not be popular with this reply but... Forget about the credentials and experience of this doctor. I respect him and am grateful for all the support he gives families. I really am. But if your child weren't sick and your friend came to you and said "I just had a phone consult with a doctor who's never examined my child and he's given us a diagnosis and recommended an expensive treatment and feels we'll only need to do this once." what would your reaction be?

 

It's quite possible that everything this doctor has said it correct. But warning bells go off when any doctor gives these sort of assurances with such little information. My concern with this particular doctor (who, again, I respect), is that he's been reluctant to look at a wider range of issues that impact our kids. He specializes in one condition and has had very good results with one particular treatment. But doctors and patients tend to be self-selecting. The reason a doctor can say XX% of my patients get well with my protocol" could be because those patients who don't respond to that protocol leave and go elsewhere. So the doctor's experiences are a skewed perspective. I say this not just about this doctor but about most doctors who settle on a set protocol. You stay with a doctor if his/her protocol works for you. You leave if it doesn't.

 

Now, this doesn't mean I'm suggesting you not see this doctor or don't do IVIG. I realize how difficult it is to find a doctor willing to help. It could be that you see excellent results. My only reason for posting the devil's advocate view is that my first Pandas doctor used the word "cure" when we were looking at plasmapheresis. It wasn't. And that word carried a lot of pain because there is no single "cure" in my opinion. There is a long road of helping the body deal and heal. So I just don't want you to get your hopes up or feel there is only one path or only one right answer. It will be a journey - a bumpy one, regardless of the treatment or doctor you chose.

 

Best of luck with your decision.

[PowPow]

I will be devil's advocate, too - playing off LLM

Remember, there are people who are NOT on this board= because they got better with abx, or one IVIG. They moved on.

Also, he did not say "cure" he said 80%, right?Technicality, I know- but, perhaps under the circumstances- which I do not know- maybe you can post more info- your child is a good candidate for a "cure"

Your child is 6, is it clear PANDAS criteria?

 

Please take this as a mom to 2 children with severe PANDAS- who have never seen Dr K (except at the OCD conference) and who did not find "cure" from IVIG, or lasting cure from plasmapheresis. Though, all combined, plus intensive therapy and steroids ~ and we doing alright now.

Edited October 8, 2012 by PowPow

[Tracie]

We love Dr. K

BUT we did need 2 IVIGs we had one at 5 years and one at 6ish she is 8 now and doing great

We would do it again if needed

Insurance helped a little bit but most of it went on credit cards

that we took money off of..

There isnt a cure for PANDAS but a treatment..

Tracie

[Jaal]

Thanks for the responses!

 

I believe in how IVIG works (my Son has shown good response to Augmentin and infrequent Ibuprofen with his tics...behavioral issues still exist....but the Tics are the hardest to deal with in my opinion).

 

Dr K did not promise any cures....he just believes IVIG will become the standard treatment in the future.

 

My concern only arose from his confidence that 1 treatment would most likely be all that was necessary....that seemed to conflict with everything I was reading here (Are some Candidates with PANDAS more likely to respond to 1 Session of IVIG than others?)

 

Good point POWPOW that some who have been succesfully treated might have moved on from this Forum!

 

I would love to conduct an IVIG poll on this Forum where people could reply with how many sessions were necessary to see consistent improvement. (OR how many they have received with no improvement).

[DeterminedMomVA]

I've been told by two PANS docs that if the child is diagnosed relatively early, one IVIG is often enough, along with rapidly responding with abx or other things to subsequent infections. The more exacerbations before diagnosis, the less likely it is that one IVIG will be enough.

[Christianmom]

If you do choose to do IVIG, there are much cheaper ways than through Dr. K's office, if you have to pay out-of-pocket. Going directly to a lab like Coram will save you a lot of money.

[Tracie]

And 1 ivig could have done ok for us BUT she caught H1N1 on the way back from Chicago.. so who knows???

But like I said if you are going to do 1 ivig save what you can for #2 ..

Tracie

[nicklemama]

DS has had one IVIG in Chicago 17 months ago. He is much better but he's not 100%. He had a flare this summer that involved ticcing. He was given a steroid burst and treatment dose abx that helped. Dr K told us there is about a 25% chance he'll need IVIG #2. Meanwhile, we just got back from a week in Orlando which consisted of 2 days in Disney and 2 days at Universal. A year ago or so, this would have been unthinkable. Putting DS on a plane would have been unthinkable. Still, he flares several times a year to various exposures. You have to look at IVIG for the long haul. Its not an immediate curative. One may do it or not. You cannot say w/ any certainty as each child is different.

[croatian mum]

hello,

 

our ds12 had the symptoms since he was 6. Dr. K.told us also that he has 85% of chance in getting much much better with 1 IVIG only.It was doubting for us too, since he had long history of symptoms, and they were really severe.He was absolutely dissfunktional in some points of his life.

We did IVIG 4 month ago. He is doing better in one way - no more loud screaming tics, but he still has a lot of differenet but, more like privat tics, and he definitly has more OCD and ADD and ADHD than ever. BUT - he can funktion like this.

Dr. K also told us that a second IVIG can be done within 6-9 month after the first one. It seems like we're gonna need it.

2 weeks ago, his loud screaming tics were back; and than I gave him full dose of Augmentin (thank's to the people on this forum) and it's much much better now.

 

So, by my opinion, I would deffinitly give IVIG a try, and if neccesary we will go for a second one, even do; I'm still not so shure how much helpfull has it been, because we have a very confusing situation with tics come and go..but, I will open a new post with some questions about it and hopefully find some answers here.

 

Again, it's worth traying.

[HT's Mom]

My son had two IVIG's with Dr. K. Definately worth it, even though we hoped it would just be one. My son was 15 and 16, and had had Pandas for years, so I do think that younger ones have a better chance of just doing one. I agree with LLM that Dr. K doesn't necessarily look wider at all the other factors and possible infections that cause pandas symptoms, but at least he is treating. I think afterward parents often need to consult further with other docs - we ended up consulting with Dr. T and treating mycoplasma specifically, whereas Dr. k was just dealing with strep. But do the IVIG regardless.

[croatian mum]

My son had two IVIG's with Dr. K. Definately worth it, even though we hoped it would just be one. My son was 15 and 16, and had had Pandas for years, so I do think that younger ones have a better chance of just doing one. I agree with LLM that Dr. K doesn't necessarily look wider at all the other factors and possible infections that cause pandas symptoms, but at least he is treating. I think afterward parents often need to consult further with other docs - we ended up consulting with Dr. T and treating mycoplasma specifically, whereas Dr. k was just dealing with strep. But do the IVIG regardless.

 

so, Your son was 15 - and did IVIG helped him ?sometimes I'm worried that we have 'discovered' ivig treatment too late..my son is 12, allready in puberty and before IVIG he was having severe vocal and motor tics for 4 years..

[HT's Mom]

My son had two IVIG's with Dr. K. Definately worth it, even though we hoped it would just be one. My son was 15 and 16, and had had Pandas for years, so I do think that younger ones have a better chance of just doing one. I agree with LLM that Dr. K doesn't necessarily look wider at all the other factors and possible infections that cause pandas symptoms, but at least he is treating. I think afterward parents often need to consult further with other docs - we ended up consulting with Dr. T and treating mycoplasma specifically, whereas Dr. k was just dealing with strep. But do the IVIG regardless.

 

so, Your son was 15 - and did IVIG helped him ?sometimes I'm worried that we have 'discovered' ivig treatment too late..my son is 12, allready in puberty and before IVIG he was having severe vocal and motor tics for 4 years..

 

 

Same here - my son had sever vocal and motor tics at various times over his life, the worst at age 11, which we treated successfully with antibiotics. But at 15 or so it cam back, different but definitely Pandas. IVIG definitely helped immediately - but not completely and he did backslide some. Did the second one six months later, again much better, not 100%. Today, he tics a bit but nothing debilitating. He'll be on prophylactic abx for a long time, and we test once in a while to see if anything new is on the radar. Did it help your son? I wish I'd known to do it back when he was little.

[kos_mom]

I certainly hope 12 years old is not too late! My two kids 19 and 22 are awaiting IVIG now!

[ptcgirl]

From our experience, each Ivig is different. My dd12 had one Ivig in may and had 100% improvement then reinfected, second Ivig in july with decent improvement then reinfected, and then third Ivig in sept with poor results so far. My dd had Lyme and coinfections, however, so it makes her case more difficult. She's also had PANDAS since 2006 so the length of time with it is making a difference too. Good luck in your decision. The good news is Ivig is a very easy treatment and my daughter actually kind of enjoys them.