How many of Dr. L's patients have needed IVIg more than once?

[lulu4]

I've been quite confused when reading about IVIg how some patients have had it many times and others only once or twice. I'm learning that not all doctors are using the same dose. I'm wondering how many of Dr. L.'s patients have needed the procedure more than once? And for those who have had it only once under her care, has healing been 100%? My DD is scheduled soon for IVIg and I am trying to figure this all out. We don't want to get our hopes up too high, but of course it's hard not to.

[beeskneesmommy]

Go into it with hope, but know that with any doc, at any dose, your child may need it more than once. It all depends upon age of onset, type of infection or multiple infections, whether the infection(s) have been cleared, degree of illness, comorbidity, and more. Each child responds differently to IVig. Some show positive changes immediately, others don't begin to show significant improvement for several weeks (mine really started to improve significantly starting at about the 6-8 week mark), some have lasting effects and some do not. However, for many, many people it is a wonderful product with impacting improvement for PANDAS/PANS kiddos. The only regret that I have is that we did not do it a year earlier. DS6 had IVig in Sept. 2012 w/Dr. L and I wanted the slightly stronger dosage that she prescribes. He is doing extremely well now, but still has some occasional flares. We are planning another in May to knock it out and boost his immune system in order to get him off so many ongoing abx. We paid out of pocket as our insuarnce did not approve it. It was worth every penny and more.

Edited April 19, 2013 by Beeskneesmommy

[lulu4]

Thanks, Beeskneesmommy. We too will be paying out of pocket; we are hoping it goes well and is effective. Thanks for your reply and good luck with the May procedure for your little guy.....Our appt. is next week. Have to admit, I am nervous!!

[beeskneesmommy]

I understand. I was scared to death but I know it was the right decision. He had come a long way from daily abx alone over 2.5 years time, but we just couldn't get him over that fence. The IVig changed everything for us. Good luck and know that Dr. L uses only the safest product (Gamunex) and does not prescrbe IVig liberally - let me know how it goes!

[Joan Pandas Mom]

Hi my son had 7 total IVIG's 1 every 4-6 weeks is what did the trick with long term abx and treatment at the OCDI in Belmont, MA. He was 16 at the time and had had untreated PANDAS for 6 years prior. He is 95% back and doing great now. Was completely incapacitated for over a year. He could not leave the kitchen most of the day. He missed his entire Sophomore year. He is a Junior now and made High Honors last semester! Thank God.

[T_Mom]

Joan -- Wow-- so good to hear this type of positive outcome!!! Wonderful.

 

Can you tell me:

1) what is OCDI ?

2) how do they work, inpatient? outpatient?

3.) Are they therapy + medical treatments?

4.) Did they prescribe and deliver the IVIG for PANDAS?

5.) Was it high dose ? Low dose ?

5.) Who there did you see--would you recommend it?

\

forgive me, this is the first time I have ever heard of this option--

thanks

[T_Anna]

Joan Pandas Mom, Thank You! Your son's story sounds so much like my son's (15)....except for the ending, we haven't gotten there yet : /

 

I just PM'd you.

 

 

Thanks again,

T.Anna

DS15 - birthday today

[Kathy4Him]

Joan...was your son the baseball player I read about on McLeans sight, youngest to go to OCDI? My son souns similiar in that we have been doing this almost 5 years and he is paralyzed with ocd fear. We have looked into Mclean but he was not medically stable at the time. Thinking we need to reconsider now. Can yo share how treatment helped?

Thanks! SO happy he has gotten his life back!!

[Joan Pandas Mom]

I would STRONGLY recommend the OCDI. My son had 5 of the total 7 IVIG's before going there for 5 weeks. He was still extremely ill when he went. I think the IVIGs and long term abx set the stage for successful treatment. Dr. Jenike and the staff there are amazing. My son was put on Zyprexa and Zoloft too. Also, lots and lots of prayers! I'll have to check the website out. Thanks. He is an athlete but not baseball. He probably was one of the youngest. They are an amazing facility.