mom md Posted August 25, 2009 Report Share Posted August 25, 2009 I know I have not posted in a long time but I am trying to learn to be "normal" again. Carter had PEX July 6th and his results were really dramatic. His chorea was almost gone, his mood was patient, sleep was great, etc. I still saw occasional "signs" but they were very minimal. Just in the last week or so though I feel like I have seen a few more obvious signs. I have seen a few more chorea movements and a few more emotional moments. Just in my brief knowledge of brain healing I am trying to stay focused on the positive. Everyday is still a good day, and that his nerves are still healing. I know patients who have limbs amputated still have "phantom"nerve pain up to a year after the limb is gone. Stroke victims are not even evaluated really until 6 months and then a year after a stroke. I did not know if anyone who had done PEX had seen a little of the "sawtooth"approach? On a positive note too, I met with my son't teacher's today and they were both very receptive to PANDAS and had read everything I had sent. One even offered to get tested to see if she was a "carrier". They also are going to have the school nurse send out a letter to parents (like a lice letter) saying a child had an allergic reaction to strep and please take your child to be evaluated with any sore throats and do NOT come back to school until they have completed the first 24 hours of antibiotics if they are diagnosed. I felt we may just have a good year. I am meeting woith an immunologist soon to develop a immune system plan for Carter and also to see if he has any other deficiencies. I am also meeting with an infectious disease docotr in Nov to sort out this antibiotiv plan and have her pick which one. I promise I will continue to post and keep everyone posted on what I learn. As I said to my mom today, "I must learn to now live with it and not be scared." Hope to all... Link to comment Share on other sites More sharing options...
dee45 Posted August 25, 2009 Report Share Posted August 25, 2009 Hope Carter continues to do well. Hope you can keep us posted. Best to you and your family. Deanna Link to comment Share on other sites More sharing options...
LNN Posted August 25, 2009 Report Share Posted August 25, 2009 Mom MD, First, I have to thank you for posting this. My son had Pex a little less than 2 weeks ago at Georgetown and your support both before and after have really helped me thru this. For the rest of you, this is my first Latitudes post (tho a few of you know me from other sites). My 6yo was diagnosed with Pandas after two raging strep infections last Sept & Oct. You've all lived our story, so I won't relive the gory details. We did Dr Cunningham's test in May and ds had 183% above normal Cam Kinase II. At the time of the draw, I was actually worried he wasn't "sick enough" for the test, as he'd been much worse than he was at the time of the draw. Two weeks later, his chorea got so bad that he started "freezing" like he had von Economo's encephalatic lethergy. Dr Latimer put ds on prednisone (2 weeks full strength, 2 weeks tapering off) and prophylactic amoxicillin. The response was amazing. For the first time since the start of the school year, my son, who had been driving thru a tunnel trying to tune in a radio station, started getting perfect reception. His teachers were blown away. The cognitive "fog" was gone. Unfortunately, this was just before summer vacation, so it didn't help with school very much. At the start of July, he had his tonsils and adenoids removed (adenoids were enlarged, which may be where the strep had been recurring even tho most of the winter the strep tests were negative). We switched to zithro because he'd gotten sick again just days before the T&A surgery. During July, he recovered about 80%. But I was terrified that the time bomb inside him would be triggered again when he went back to the germ fest called school. So we discussed IVIG or Pex with Dr Latimer for August. We opted for Pex because our insurance says it covers Pex specifically for Pandas (still holding my breath for bills to come in, so still bracing for a battle). Our recovery experience so far has been the same sort of sawtooth pattern you're seeing. When we first got home, I was depressed because I still saw the same tics (vocal and motor). He was still 80% better than he had been in May, but it felt like the Pex hadn't made any difference. But my husband (who had gone along with the Pex begrudingly) swore he saw subtle but significant changes - mostly in his demeanor. Less rigid in having to get things his way, quicker to let things drop and move on to other things, less anxious, more cooperative in play, respectful of his sister, less bossy...I saw these things too, but still have a hard time not fixating on the physical symptoms. But a few days ago, ds said, out of the blue, "Mom, I feel better since we got home from the hospital". And about 4 out of 10 nights, he's gone to bed not complaining that his muscles hurt. So there are changes. It just isn't "miraculous". Some days I think his remaining tics are less frequent, less intense. Other days they seem as strong as ever. Overall, there is improvement. But we do see steps "backward" sometimes. I was feeling ok until yesterday, when I saw a morning full of "flashback" symptoms. They went away by the afternoon, but it brought back that awful feeling in the pit of my stomach. Last night he hummed up a storm while watching TV. We've seen symptoms kick up especially after he's been really active. And he's been in the pool a lot (he's been in the hospital so much of his summer that I can't take that away with only one week left before school). But like you, we see two steps forward and one step back. I like your explanation of phantom pain and will hold on to that during those "flashback" moments. I also tell myself that he's constantly using the basal ganglia to process inputs and just like you can overuse a sore muscle and pay for it at the end of the day, maybe his symptoms act up in a similar manner. I do comfort myself with the thought that the Pex may not have sped up the healing that was already underway, but it did greatly reduce our odds of having to live with a recurrence. No one at the hospital could guarantee that Pex would be a cure. No one knows what will happen when ds is re-exposed to strep (and since he's not quite 7, there will certainly be a "next time" before he reaches puberty). But for now, I have to tell myself we've done all we can for the time being and now we just have to give him time to heal at his own pace. I described the healing to Dr. Cunningham as trying to catch a glimpse of your child growing. You watch and watch and don't see any changes. Then all of a sudden, you blink and realize their clothes are an inch too short. Hopefully, recovery will be the same way. Maybe it will be so subtle that it will only be in hindsight that we realize it has slowly gone away. Please keep me posted. We're in this boat together! LLM Link to comment Share on other sites More sharing options...
dee45 Posted August 25, 2009 Report Share Posted August 25, 2009 Thanks for sharing your story I hope everday brings you some improvment whether big or small. Deanna Link to comment Share on other sites More sharing options...
fuelforall Posted August 25, 2009 Report Share Posted August 25, 2009 Your insurance company says it covers PEX for PANDAS???????? Please tell all of us more, if you would. Thanks. Michael Link to comment Share on other sites More sharing options...
LNN Posted August 25, 2009 Report Share Posted August 25, 2009 Your insurance company says it covers PEX for PANDAS????????Please tell all of us more, if you would. Thanks. Michael We have Cigna - the coverage document is here - http://www.cigna.com/customer_care/healthc...smapheresis.pdf - or go to cigna.com and use the search word "pandas" - you'll only get two hits. On page 1 it says it covers Plasamapheresis for Pandas. However, later in the document, it gives specific codes that are covered and there's nothing that spells out Pandas. So I'm holding my breath that all of the various docs at Georgetown figure out the secret code and it goes thru. Andrea and Dr Latimer spent 30 minutes on the phone with Cigna the day before we were admitted and got quite the run around before Andrea finally found a code for general admission that Cigna approved for one day. I gave this document to each of the doctors who were involved in treatment, but after this past year, I'm a little jaded to say the least and I will fall off my chair if this goes thru without some sort of battle. On the positive side, it was encouraging to see Pandas recognized as a real disease and have Pex recognized as a valid i.e. not experimental) treatment. While we were at Georgetown, another mom was there with her son for Pex and their insurance (BCBS Pennsylvania) was supposedly covering it. Link to comment Share on other sites More sharing options...
dee45 Posted August 25, 2009 Report Share Posted August 25, 2009 Hi, we have cigna as well is it CIgna open access?? Deanna Link to comment Share on other sites More sharing options...
LNN Posted August 25, 2009 Report Share Posted August 25, 2009 Hi,we have cigna as well is it CIgna open access?? Deanna The card says choice fund OA Plus. But as I said, still waiting to see what bills come my way... Link to comment Share on other sites More sharing options...
dee45 Posted August 25, 2009 Report Share Posted August 25, 2009 Hi, do you know how they coded it? Just in case I would need for down the road. Deanna Link to comment Share on other sites More sharing options...
LNN Posted August 25, 2009 Report Share Posted August 25, 2009 Hi, do you know how they coded it? Just in case I would need for down the road. Deanna I have no idea. I haven't seen anything yet. Link to comment Share on other sites More sharing options...
mom md Posted August 25, 2009 Author Report Share Posted August 25, 2009 BCBS of NC did cover our PEX. I am not sure which code they used but I will try to find out. Link to comment Share on other sites More sharing options...
Megs_Mom Posted August 25, 2009 Report Share Posted August 25, 2009 Do you know if BCBS also covers IVIG? We are considering for future, and I have been trying to figure this out all morning. I am wondering if we'll need a CVID/Selective iGg subclass diagnosis to get IVIG if needed, or if we can get it under the PANDAS diagnosis. We have still not found anyone to run these tests! Thanks! BCBS of NC did cover our PEX. I am not sure which code they used but I will try to find out. Link to comment Share on other sites More sharing options...
ShaesMom Posted August 25, 2009 Report Share Posted August 25, 2009 --We've had BCBS of NJ pay for IVIG with the CVID dx. We are still waiting to see if they will pay for the large two day dose that was also coded as CVID. Seems to be a shortage of Immunologists in NC. I've had two people from the PID Forum recommend Rebecca H. Buckley in Durham. Her number is 919-684-2922. Also, Robin Lacroix who is an infectious disease doc but also does immunology. I believe she is located in SC. Has your dd been sick a lot with sinus infections, ear infections, upper respiratory infections? If so, maybe try getting her in for immune testing based on history of illnesses and not mention Pandas until you get in the door. Do you know if BCBS also covers IVIG? We are considering for future, and I have been trying to figure this out all morning. I am wondering if we'll need a CVID/Selective iGg subclass diagnosis to get IVIG if needed, or if we can get it under the PANDAS diagnosis. We have still not found anyone to run these tests! Thanks! BCBS of NC did cover our PEX. I am not sure which code they used but I will try to find out. Link to comment Share on other sites More sharing options...
Megs_Mom Posted August 25, 2009 Report Share Posted August 25, 2009 Lot's of ear infections early, and now at least 1-2 per year, even at age 8. Lots of upper respiratory - not sure how to quantify. Also, she has high ANA, which usually gets us into specialists for evaluation . I have put her number on my computer & will call in the am. I would like to at least explore CVID. --We've had BCBS of NJ pay for IVIG with the CVID dx. We are still waiting to see if they will pay for the large two day dose that was also coded as CVID. Seems to be a shortage of Immunologists in NC. I've had two people from the PID Forum recommend Rebecca H. Buckley in Durham. Her number is 919-684-2922. Also, Robin Lacroix who is an infectious disease doc but also does immunology. I believe she is located in SC. Has your dd been sick a lot with sinus infections, ear infections, upper respiratory infections? If so, maybe try getting her in for immune testing based on history of illnesses and not mention Pandas until you get in the door. Do you know if BCBS also covers IVIG? We are considering for future, and I have been trying to figure this out all morning. I am wondering if we'll need a CVID/Selective iGg subclass diagnosis to get IVIG if needed, or if we can get it under the PANDAS diagnosis. We have still not found anyone to run these tests! Thanks! BCBS of NC did cover our PEX. I am not sure which code they used but I will try to find out. Link to comment Share on other sites More sharing options...
ShaesMom Posted August 25, 2009 Report Share Posted August 25, 2009 VERY common to have a lot of ear infections and upper respiratory infections with CVID. I would definitely explore the possibility of CVID. Autoimmune illnesses are also very common with CVID. Lot's of ear infections early, and now at least 1-2 per year, even at age 8. Lots of upper respiratory - not sure how to quantify. Also, she has high ANA, which usually gets us into specialists for evaluation . I have put her number on my computer & will call in the am. I would like to at least explore CVID. --We've had BCBS of NJ pay for IVIG with the CVID dx. We are still waiting to see if they will pay for the large two day dose that was also coded as CVID. Seems to be a shortage of Immunologists in NC. I've had two people from the PID Forum recommend Rebecca H. Buckley in Durham. Her number is 919-684-2922. Also, Robin Lacroix who is an infectious disease doc but also does immunology. I believe she is located in SC. Has your dd been sick a lot with sinus infections, ear infections, upper respiratory infections? If so, maybe try getting her in for immune testing based on history of illnesses and not mention Pandas until you get in the door. Do you know if BCBS also covers IVIG? We are considering for future, and I have been trying to figure this out all morning. I am wondering if we'll need a CVID/Selective iGg subclass diagnosis to get IVIG if needed, or if we can get it under the PANDAS diagnosis. We have still not found anyone to run these tests! Thanks! BCBS of NC did cover our PEX. I am not sure which code they used but I will try to find out. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now