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Posts posted by LNN

  1. I'm really happy for you and your whole family! I know it's been a long road for you.


    I just wanted to add a quick, if less positive, update on our own recovery. We are three weeks post-pex. The first week showed subtle improvements, mostly in demeanor. The second week saw some heart-breaking steps backward, worse than before we went to Georgetown. Tics seemed to explode and that hideous cognitive fog came back with a vengeance. The difference between this and an exacerbation was that unlike the "healing in reverse" thing people were talking about the other day, this time symptoms would come out of nowhere, then disappear. More like a fireworks display instead of a bell curve of waxing and waning symptoms. We also had a "turning of the pages" event where my son remembered some things from when he was 3.


    In our third week, many symptoms are subsiding. But the fog remains. I have hope that it will lift and he will return to the kid I saw this summer when he started to heal after his T&A and was strep-free for the first time in a very long time. Unlike many, my son's math ability remains strong during episodes but his reading really really tanks. Over the summer, his reading improved by nearly 3 levels in a month. So to see it all slide away has been heart-wrenching for both of us. But at least he knows he's capable of more and that it's the disease, not an innate lack of ability. And that has helped him hold on to hope.


    I don't consider the PEX procedure a really big deal. My son took it in stride and I never felt worried. Yes, there were some moments I don't fondly remember. But I was more worried during his T&A than during the Pex. And I do believe he is healing. I'd do it again in a heartbeat.


    I just wanted to add a note of caution to peoples' expectations. If you're considering PEX, or even IVIG for that matter, I don't think you can expect an immediate or even a linear path of healing. If you get that, awesome! But if you prepare for ups and down, I think it'll make those set backs easier to weather. Nonetheless, I do think it's the right thing to do for those kids who can't seem to get healthy any other way.



  2. acdroberts-

    you're not alone. My son is tic-dominant Pandas as well. During his worst episode last fall, he had OCD symptoms that interfered with life. But usually it's mild. More like certain things have to be done to "feel right". Gets very aggitated if he can't follow thru on a script of how things "should be". But no worries that something bad will happen if a ritual isn't performed. It will just nag at him and he "has to" follow through - I suppose more compulsion than OCD with associated dire consequences.


    But my son pays the price of "dodging the ocd" by having tics so bad that he looks like he's being electrocuted (or full body myoclonic jerks). On two very bad episodes, he's "frozen" like a statute for about 3 seconds at a time. Can't move or speak - will freeze mid-stride or mid-sentence, then after a few seconds would pick up where he left off. (Woke my husband up at 2am last fall convinced son had von Economo's encephalitic lethargy).


    FYI - Dr Cunningham's notes on our results were that ds had elevated anti-lysoganliosides and anti-tubulin but normal D1 & D2. CAM Kinase 183% (too bad our sample was taken 10 days before he started "freezing" again - I wish I could know what those levels were). So the D1/D2 seem associated with higher OCD and the lyso/tubulin seem to go with the tics and/or other lovely symptoms.


    I sometimes wonder tho if doctors who see tic-dominant Pandas aren't quicker to diagnose our kids with TS and dismiss Pandas. That's what our 1st neurologist did. It was our family therapist who urged us to not accept a TS dx and continue searching for Pandas treatments. When we got Dr Cunningham's reports back and ds responded dramatically with prednisone, it was all I could do to not write to the 1st neurologist and say "remember the respiridol, tenex and haldol you wanted us to consider? Remember your scoffing at antibiotics? Well, in your face!" We're now with Dr Latimer and are starting to see improvements 2 1/2 weeks after PEX at Georgetown.



  3. LLM- that is great news. This illness is so tricky, but it definately seems pex has worked for most. I was thinking- pex removes the antibodies, but if there was alread inflammation, that may take time to heal. Would it be possible to try a steroid burst to jumpstart that healing?


    Given that we've already thrown away the body's "standing army" of antibodies to all sorts of illness, I'd be very leary of prednisone and suppressing the immune system even further. My son started this nightmare with his first strep infection 51 weeks ago - the second week of school last year. Between that and H1N1, I'd rather just let the body move at its own pace and only do things that will boost the system, not suppress it.


    On a positive note, today there is noticeably less humming (vocal tic). Will keep you posted, but am turning the PC off for the day to go to the park on our last day of summer vacation. Sometimes it's too easy to spend too much time researching and forget to enjoy the kids.

  4. Diana has hooked me up with a mom whose daughter had PEX 8 years ago (should someone tell Diana that she's reached "star" status and can be recognized by just her first name, like Oprah or Prince?)


    I only traded a quick email with the mom and will hopefully talk with her over the phone. But she said it took 6 months for healing. But her daughter just left for college yesterday - far far away - packing Advil as her only medication. So hope has returned in our house (tho it's tempered by the start of school tomorrow) :( :(


    Will keep everyone posted...

  5. Alex,

    We were at Georgetown for PEX a week before you, also under Dr Latimer's direction. Our experience was very similar, although my son did not have any allergic reaction and we had 3 uneventful days in the PICU, aside from some minor issues with blood clotting on its way out of the catheter line on its way into the pheresis machine. They had to occasionally stop and use heparin or saline to draw the clots out and resume the process. But at no time did I feel there was any danger. The entire staff was very experienced. I can't say enough about the Hemonc doctors. They were awesome. We met with Dr Latimer prior to our admission, but never saw her during or after our stay.


    I would say the worst part of the entire process was the removal of the 2" x 2" adhesive bandage that holds the catheter line in place for 3 days. I helped the nurse, but she was way too conservative with the use of adhesive remover and my son screamed as tho he were in labor. I think he scared every kid in the PICU. He was an absolute trooper for 3 days of needles, pain, and being cooped up. So I don't think he was over-reacting with the pain that came from removing the adhesive that was millimeters away from his scrotum. The actual removal of the catheter line was nothing. But the adhesive bandage? Ugh!


    I do want to give you one word of caution on your expectations. Like you, we had already started to see a decline in my son's symptoms after a year of almost constant re-infection and exacerbation. In May, just after we sent a blood draw to Dr Cunningham (183% above normal Cam Kinase II, near the SC kids when she charted his results), his tics got so bad he actually started "freezing" like a statue for about 3 seconds at a time, and he'd stop speaking mid-sentence for abut 3 seconds. This was the second episode where this had happened. It was terrifying. In July, he had a T&A and was starting to heal on his own. But because of previous "freezing" episodes that reminded me of von Economo's, I couldn't handle the fear that there was still a time bomb inside that would go off again as soon as he was re-exposed to something. I wanted that junk out. We too weighed IVIG. But because his chorea and tics had been so bad in the past, I worried whether one IVIG treatment would be enough. And I figured that it made more sense to take the junk out and then, if need be, put a donor's "good stuff" in instead of the other way around. We too were told by Dr Latimer that she'd never seen a kid who'd had PEX come back for another treatment (I believe Dr Swedo had one case). So off we drove, 9 hours to DC...


    We got home two weeks ago today. The first week, his tics were same as they'd been before our trip (his OCD was also mild before and after). But there was a subtle but significant improvement in my son's demeanor. He was calmer, when he was told no about something, he let it go and said ok instead of arguing endlessly about getting his way, he could play by himself, he was respectful of his sister, not bossy or dictatorial. There was cooperation. He said he felt better and for the first time in almost a year, he started going to bed without saying the words "my muscles are sore and I have a mixed up feeling". We were cautiously optimistic.


    Unfortunately, this past week, his cognitive "fog" has returned and his tics are worse - stronger, more frequent. And we're seeing the return of tics we hadn't seen all summer. His muscles are also sore again. It's been a rough week on us emotionally. Very hard to be philosophical or tell yourself it's a healing process. I've been told that Dr K says IVIG kids who seem to have an inner struggle after treatment seem to do the best long term, but no one seems to know if this is also the case with PEX. I do know that another Pandas boy who had PEX the same week we did also saw his tics get worse about a week after he got home. His family's been on vacation, so I don't know how he is right now. MomMD also mentioned a sawtooth pattern to her son's recovery. On a positive note, my son's improvements in temperament/demeanor have not gone away. So I hold on to that and hope that this is just part of the process.


    I dread the start of school, fear swine flu, and cannot seem to mentally get to a place where this feels that it's behind us. There are times I get angry at the lack of followup on PEX patients (or IVIG ones for that matter) to chart progress and determine what's "normal" during recovery. But for the moment, all we can do is wait and continue to be strong - and patient. If after 3-4 months we don't see the improvement we were hoping for, or if swine flu hits our house with a vengeance, perhaps we'll look to IVIG for an immune boost. That's my plan B that helps me sleep at night.


    Please keep me posted - with good news or bad. I share everyone's frustration at feeling adrift. I am getting close to the point of taking our life savings, reserving a conference room at the Leavy Center at Georgetown, inviting all the families and doctors there, and locking the doors until we emerge with some answers. But first I guess I need to make sure we won't need our life savings to pay medical bills!


    I wish your family all the best in recovery!

  6. Your insurance company says it covers PEX for PANDAS????????

    Please tell all of us more, if you would.






    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.

  7. 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!


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