Anxiety is major issue

[melanie]

what dosage?????

[PhillyPA]

My son's dosage was 2 gr/kg.

[philamom]

My son's dosage was 2 gr/kg.

 

May I ask where you had this done? In Philadelphia?

[sf_mom]

Wishing you the best! I suspect if there is an underlying infection of Lyme the right antibiotic will do wonders for his recovery and maybe negate the need for more aggressive treatments. Our son shed a good deal of his remaining symptoms weeks 19 through 21 post IVIG when we combo'd up antibiotics treating it 'Lyme Like'.

 

-Wendy

[momto2pandas]

My ds4 was never very anxious, but my ds6 had some anxiety and it went away entirely after IVIG. Even what I considered to have been normal-range 6-year-old shyness around unknown adults went away. However, we went off of antibiotics 10 days ago, and anxiety started to creep up again (we started antibiotics again yesterday). So for him at least, it seemed like the combination of IVIG and continued antibiotics gives the optimal result.

 

I'm just hoping that we regain ground over the next day or 2 and didn't screw up with the trial off of ab.

[PhillyPA]

My son is a patient of Dr. Latimer. He had the ivig at Georgetown.

[PhillyPA]

By the way, getting treatment in Philadelphia is nearly impossible. I heard that Dr. Legados at St. Chris is open and willing to treat. He is a neurologist. However, we are sticking with Latimer. She really knows what she is doing.

[philamom]

By the way, getting treatment in Philadelphia is nearly impossible. I heard that Dr. Legados at St. Chris is open and willing to treat. He is a neurologist. However, we are sticking with Latimer. She really knows what she is doing.

 

Yes, I know. I've been to CHOP (Neurology and Dr. Elia) with no success! I deal with Dr. K, Dr. Trifileti, and most recent--Dr. B. (Truly Remarkable Doctors!!)

[Joan Pandas Mom]

Wendy, do you know why Dr. K. said wait a minimum of 12 weeks post IVIG to test for Lyme? We tested at 7 weeks, Opps. I am getting the results tomorrow. I'm very curious, now I am wondering if they are going to be accurate. We did use Igenex.

[sf_mom]

No I don't.... he told that to another mother. I can't wait to hear your results!! Please post when you know them.

 

 

 

Wendy, do you know why Dr. K. said wait a minimum of 12 weeks post IVIG to test for Lyme? We tested at 7 weeks, Opps. I am getting the results tomorrow. I'm very curious, now I am wondering if they are going to be accurate. We did use Igenex.

[melanie]

Does anyone have any recent research studies statng higher dose iVIG helps for anxiety???

Thanks

 

Melanie

[tpotter]

Melanie, In our experience, we have found that both IVIG and PEX helped our ds 14 with anxiety. That being said, it really depends if there is any background to the anxiety. What I mean by that is that he still has social anxiety, and this directly affects his ability to go back to public school (for which we are fighting the school district tooth and nail, because they significantly contributed to the problem.) He was bullied really badly before we moved to Philly...for 3 years. The year before we moved here, though, he finally got help, via a 504 plan, and it was wonderful. When we moved to Philly, the school district refused to honor the 504 plan, he was bullied severely again, and he talked about wanting to be dead (nothing was done by the school district, because they told us it "wasn't a red flag.") He crashed at that point (PANDAS got significantly worse, and he ended up hospitalized with scarlet fever, SC, etc, had a total of 3 school refusals, and after the hospitalization started having school phobia...never went back.

 

IVIG and PEX took the edge off the whole anxiety piece (because he certainly had anxiety, as well caused by PANDAS.) But, it did not 100% get rid of his anxiety, because he is still afraid to return to the public schools, and has announced that if they try to make him, he will just refuse to go back to school at all...that'll certainly create an interesting problem for the school district

 

I hope this answers your question.

[melanie]

Thats horrible,You should sue the school district.We go to a private SE school so Im not as worried about the bullying.Im a middle school teacher and they are brutal to eachother.

I want my ms to up the IV and Id like to show her some documentation.But I cant find anything.UGHHH

 

Melanie