We're headed towards IVIG!

[Suzan]

Our local neurologist is recomminding IVIG for my dd8. I am thrilled/nervous. First hurdle, approval by my insurance company. They should cover it so I hope that goes smoothly. I can't believe we got to this point. Thank you all here for all your information and support. Thank you Diana P for all your support and knowledge over the past year!

 

Susan

[EAMom]

Our local neurologist is recomminding IVIG for my dd8. I am thrilled/nervous. First hurdle, approval by my insurance company. They should cover it so I hope that goes smoothly. I can't believe we got to this point. Thank you all here for all your information and support. Thank you Diana P for all your support and knowledge over the past year!

 

Susan

 

exciting!

[Doug]

We had ivig with dr k 6 weeks ago

and we are doing great.

now it is just wait and see

[bubbasmom]

Second round of IVIG just today. First round was back in October but my son got strep again. We didn't think it was working at first, but Dr. K said it could take 6-8 weeks, and sure enough at the 6 week mark all of the sudden we saw vast improvement. My son got PANDAS again Feb. 10 so we did it again.

[Joan Pandas Mom]

This is all such great news. We are thinking about IVIG next step too.

[Johnsmom]

Being a newbie I am totally confused. Our 1st appt with Dr K is March 31st. Your post says that you are headed towards IVIG. Do most people try other things first before trying IVIG? I was expecting to start with IVIG right away. Financially I would lilke to know what I am up against but I dont know if anyone here can tell me that.

I am reading about all these kids with these sudden onset severe symptoms. My son is 8 and was diagnosed PDD-NOS when he was 5. He does have weird body movements, weird faces and tics that come and go. His speech fluctutates but then gets better. He has anxiety and obsesses about this video game. He stuggles socially. But then I get explosions of normalcy where he wants to do everything and plays almost normally with other children.

UGH!!!

Will he start us out on antibioitcs first?? We have 6 titer tests these past two years that show elevated ASO's but no elevated DNASE.

thanks

johnsmom

 

 

 

Our local neurologist is recomminding IVIG for my dd8. I am thrilled/nervous. First hurdle, approval by my insurance company. They should cover it so I hope that goes smoothly. I can't believe we got to this point. Thank you all here for all your information and support. Thank you Diana P for all your support and knowledge over the past year!

 

Susan

[Suzan]

Being a newbie I am totally confused. Our 1st appt with Dr K is March 31st. Your post says that you are headed towards IVIG. Do most people try other things first before trying IVIG? I was expecting to start with IVIG right away. Financially I would lilke to know what I am up against but I dont know if anyone here can tell me that.

I am reading about all these kids with these sudden onset severe symptoms. My son is 8 and was diagnosed PDD-NOS when he was 5. He does have weird body movements, weird faces and tics that come and go. His speech fluctutates but then gets better. He has anxiety and obsesses about this video game. He stuggles socially. But then I get explosions of normalcy where he wants to do everything and plays almost normally with other children.

UGH!!!

Will he start us out on antibioitcs first?? We have 6 titer tests these past two years that show elevated ASO's but no elevated DNASE.

thanks

johnsmom

 

Well, for us, I have spent a lot of time in my city searching for local docs who can support us here. I didn't have anyone to go to right away to ask for IVIG. We also had to spend the time showing how my girls responded to the antibiotics, how they reacted to strep, documenting what is going on with them since they got this at such a young age and "sudden onset" was harder to figure out with them even though we did have a strong documented episode related to strep which is what got us on the pandas path . We learned about pandas about 1 year ago and it's been a learning experience for us.

 

Also, we saw Dr. Trifiletti as our pandas specialist in NJ. He does not like to treat with IVIG right away and treats first with antibiotics, steroids, runs a battery of tests to see if any other underlying bacteria infection can be located, immune testing, etc. But that was just this past December that we saw him. As far as what Dr. K will recommend for your ds, I'm not sure, maybe others who have seen Dr. K can comment on their experience. But I do feel that for most people here, IVIG is not the first thing that is tried for the kids.

 

Good luck with your appt with Dr. K!

 

Susan

[Johnsmom]

Thanks for your response Susan-

 

Our lives did a complete 180 about 3-4 weeks ago. When Dr Usman (DAN! doctor) began taking blood tests for strep based on Johns behaviors, I was told that he didnt have PANDAS becuase his DNASE were not elevated. This was two years ago. I dont totally blame them for thinking that then. But I am a little miffed that she barely treated him with antibioitcs and always chose to do bio-film protocol with herbs and enzymes. I would always tell them when his groin rash returned too and a lot of times I was told it was yeast. I dont think its yeast. It wasnt until our last appt that her PAC told us that John kind of did have PANDAS (not sure his exact words) I saw Dr Usman in the hall and started asking her how we could get rid of John's strep. She started talking about IVIG and Dr K and Swedo. So off we went with our herbs. My husband got pissed the next day and said he was tired of John being the "guinea pig" I tried to calm him down. I trusted Dr Usman and really thought that if we gave john too many antibioitcs he would grow resistant to it. Anytime I ever googled strep and behaviors, PANDAS would show up and I would ignore it cuz my kid didnt have it. Well I really dont feel that way anymore. I began reading more and more and ended up with the Saving Sammy book. I read it in two days. I ended up e-mailing panda resource network at 2 am and then got a call from Diana P. SHe heard my story and told me that she just finished a meeting with Dr K and Swedo and urged me to make an appt with Dr K.

PHEW!! I have been a complete mess these past few weeks. I feel like we are back to the begining when we started the bio-medical approach.

Boy arent you glad your responded to my post. LOL!!! Thanks for listening.

Ann

 

Being a newbie I am totally confused. Our 1st appt with Dr K is March 31st. Your post says that you are headed towards IVIG. Do most people try other things first before trying IVIG? I was expecting to start with IVIG right away. Financially I would lilke to know what I am up against but I dont know if anyone here can tell me that.

I am reading about all these kids with these sudden onset severe symptoms. My son is 8 and was diagnosed PDD-NOS when he was 5. He does have weird body movements, weird faces and tics that come and go. His speech fluctutates but then gets better. He has anxiety and obsesses about this video game. He stuggles socially. But then I get explosions of normalcy where he wants to do everything and plays almost normally with other children.

UGH!!!

Will he start us out on antibioitcs first?? We have 6 titer tests these past two years that show elevated ASO's but no elevated DNASE.

thanks

johnsmom

 

Well, for us, I have spent a lot of time in my city searching for local docs who can support us here. I didn't have anyone to go to right away to ask for IVIG. We also had to spend the time showing how my girls responded to the antibiotics, how they reacted to strep, documenting what is going on with them since they got this at such a young age and "sudden onset" was harder to figure out with them even though we did have a strong documented episode related to strep which is what got us on the pandas path . We learned about pandas about 1 year ago and it's been a learning experience for us.

 

Also, we saw Dr. Trifiletti as our pandas specialist in NJ. He does not like to treat with IVIG right away and treats first with antibiotics, steroids, runs a battery of tests to see if any other underlying bacteria infection can be located, immune testing, etc. But that was just this past December that we saw him. As far as what Dr. K will recommend for your ds, I'm not sure, maybe others who have seen Dr. K can comment on their experience. But I do feel that for most people here, IVIG is not the first thing that is tried for the kids.

 

Good luck with your appt with Dr. K!

 

Susan

[Megs_Mom]

Our local neurologist is recomminding IVIG for my dd8. I am thrilled/nervous. First hurdle, approval by my insurance company. They should cover it so I hope that goes smoothly. I can't believe we got to this point. Thank you all here for all your information and support. Thank you Diana P for all your support and knowledge over the past year!

 

Susan

 

I'm really glad for you! We saw him as well, and really liked him a lot. Glad you are on a good path - hope it works really well!