dcmom Posted March 16, 2010 Report Share Posted March 16, 2010 Hi all! My 9 1/2 year old had plasma pheresis a week ago, she was in the midst of a really horrible episode. The good news is, thanks to the medical intervention, we are out of a total crisis. She does however still have a lot of healing to do. The rages and total depression are gone. A lot of the panic ocd is gone. She is left with separation anxiety, lots of general anxiety/ ocd ish thoughts, emotional lability. The other thing is this regressive behavior. When she got really bad, and was homebound, I noticed she played a lot more than she has in the past year and a half. She had been kind of growing out of lots of toys- and given most of them to her little sister. At the time, I was happy for the resurgence in play- because it kept her busy. Now though, I have to admit it is really bothering me (its the difference in her- from a really mature 4th grader with maturing interests, to a girl that is excited about stuff she hasn't cared about in 2 years). I know this seems petty, and I do not discourage her, as I only want to see her happy right now. But, she is in fourth grade, and she plays like a first grader. She is so excited over this new Polly Pocket toy she ordered.... Again, I am thanful for any happiness she has- but these dramatic changes are scary... So, I wondered if others have seen this? And, did it go away as their symptoms abated? Link to comment Share on other sites More sharing options...
7upMom Posted March 16, 2010 Report Share Posted March 16, 2010 My 17 y/o daughter and I were just discussing this on my 9 y/o son. His play and emotion behaviors are around 5 y/o , it really concerns everyone here it is getting worse and worse. The rages have diminished HUGELY but this regression really worries me also. My older son is 16 so I know what a 9 y/o normal behavior is and we aren't even close here. Link to comment Share on other sites More sharing options...
GatsMom Posted March 16, 2010 Report Share Posted March 16, 2010 Hi all! My 9 1/2 year old had plasma pheresis a week ago, she was in the midst of a really horrible episode. The good news is, thanks to the medical intervention, we are out of a total crisis. She does however still have a lot of healing to do. The rages and total depression are gone. A lot of the panic ocd is gone. She is left with separation anxiety, lots of general anxiety/ ocd ish thoughts, emotional lability. The other thing is this regressive behavior. When she got really bad, and was homebound, I noticed she played a lot more than she has in the past year and a half. She had been kind of growing out of lots of toys- and given most of them to her little sister. At the time, I was happy for the resurgence in play- because it kept her busy. Now though, I have to admit it is really bothering me (its the difference in her- from a really mature 4th grader with maturing interests, to a girl that is excited about stuff she hasn't cared about in 2 years). I know this seems petty, and I do not discourage her, as I only want to see her happy right now. But, she is in fourth grade, and she plays like a first grader. She is so excited over this new Polly Pocket toy she ordered.... Again, I am thanful for any happiness she has- but these dramatic changes are scary... So, I wondered if others have seen this? And, did it go away as their symptoms abated? Been there and done that, too. During both the 9 yr old episode and the 11 yr old episode he regressed back to interests and play that he had previously outgrown. It actually seemed to bring him some peace at the time. When the episode ended, he went right back to age appropriate interests. I haven't had that regressed interest in him this episode and I'm not sure what to make of it but it was definitely present in earlier years and he popped right back to "normal" once his body recovered. Link to comment Share on other sites More sharing options...
Fixit Posted March 16, 2010 Report Share Posted March 16, 2010 Playing devil's advocate here.... i think maybe it could be each child is different.... and sometimes my ds is too cool for school and other days he want to play with his 2 1/2 year old brother...or play something with the 7 year old... i think this is a very transitional age I want to add that you as a parent of that particualare child have a better idea of what is going on than i do i'm just putting some thougths out that might ease you!!! Link to comment Share on other sites More sharing options...
Fixit Posted March 16, 2010 Report Share Posted March 16, 2010 Can i ask is plasma ph, more readily covered by ins? or did you have to pay out of pocket and is it as costly as ivig? thanks to those responding!!! Link to comment Share on other sites More sharing options...
7upMom Posted March 16, 2010 Report Share Posted March 16, 2010 Playing devil's advocate here....i think maybe it could be each child is different.... and sometimes my ds is too cool for school and other days he want to play with his 2 1/2 year old brother...or play something with the 7 year old... i think this is a very transitional age I want to add that you as a parent of that particualare child have a better idea of what is going on than i do i'm just putting some thougths out that might ease you!!! Fixit: this makes sense and I completely agree with trying to look at it with an openmind cause I know I can get worried and anxious really easy about where my son is at in terms of this , but DCMOM- not sure about you but with my 9 y/o it is def different its not the normal transitional thing- I say this out of 1) having 7 kids and I know they are all completely different even the twins in every way possible and 2) there is just something not normal ( whatever normal is lol) or ok about it with him. It is very noticable by everyone in the family also even the 6 y/o's before pandas we were thinking about some type of autism he could possibly be presenting with Link to comment Share on other sites More sharing options...
dcmom Posted March 16, 2010 Author Report Share Posted March 16, 2010 Thanks everyone.... It is definately different- I know the transitional phase- that is where she was before pandas hit. She is now really playing (and sometimes acting) like a 5 year old. Sigh, it does bring her some peace and happiness, so we just go with it. Gats mom- thanks a million times, again, your longer term perspective is REALLY helpful. As I said, it is a minor thing to complain about, just that I can have some confidence that it will resolve in time.... Fixit- Ha! Well we had to pay for the plasma pheresis up front because our darn insurance company was giving us a problem (we had our other daughter pex'd in october and insurance co was refusing to pay after the fact), and we didn't want to wait as we were in crisis. We had to pay, gulp, $26k, and were potentially on the hook for $25k for other daughter. When she was released, the insurance co came through with approval. (But I am seeing for previous daughter they are only paying hospital $6k). Now I have to see if I can get our money back from the hospital. So, much more costly than IVIG, and I think similar difficulty in getting approval. It is a lifesaver, though. Link to comment Share on other sites More sharing options...
fuelforall Posted March 16, 2010 Report Share Posted March 16, 2010 My 17 y/o daughter and I were just discussing this on my 9 y/o son. His play and emotion behaviors are around 5 y/o , it really concerns everyone here it is getting worse and worse. The rages have diminished HUGELY but this regression really worries me also. My older son is 16 so I know what a 9 y/o normal behavior is and we aren't even close here. Sounds like my nine year old. Sigh. Link to comment Share on other sites More sharing options...
fuelforall Posted March 16, 2010 Report Share Posted March 16, 2010 Can i ask is plasma ph, more readily covered by ins?or did you have to pay out of pocket and is it as costly as ivig? thanks to those responding!!! Fixit: $20-$30,000 Plasmapharesis $4-13,000 IVIG (depends on weight, how many days) IVIG for 55 pound son- $3500-5000 per day. Most of the additional cost-$5,000 is for hospital stay. Have it done at home, reduce overhead. Others can chime in here. Link to comment Share on other sites More sharing options...
thereishope Posted March 16, 2010 Report Share Posted March 16, 2010 I'm going to play devil's advocate as well. My 9 year old, 3rd grade, non-PANDAS son sometimes acts and plays with things that are way too young for him. I think it's because he's the oldest? It can also be that she has had a lot going on, a lot of internal struggles. Those younger toys is what she finds comfort in and reminds her of a time when things weren't so bad. I think when she's ready to move on, those toys will have a special place in her heart but she will broaden her horizons. Is her play picking up where it was right before PANDAS hit? Link to comment Share on other sites More sharing options...
dcmom Posted March 16, 2010 Author Report Share Posted March 16, 2010 No- pandas struck mildly about a year ago, and debilitating in January. Her play is back to what it was about 4 years ago! It is not really a bad thing, just worrisome as a mom..... Link to comment Share on other sites More sharing options...
Megs_Mom Posted March 16, 2010 Report Share Posted March 16, 2010 Thanks everyone.... It is definately different- I know the transitional phase- that is where she was before pandas hit. She is now really playing (and sometimes acting) like a 5 year old. Sigh, it does bring her some peace and happiness, so we just go with it. Gats mom- thanks a million times, again, your longer term perspective is REALLY helpful. As I said, it is a minor thing to complain about, just that I can have some confidence that it will resolve in time.... Fixit- Ha! Well we had to pay for the plasma pheresis up front because our darn insurance company was giving us a problem (we had our other daughter pex'd in october and insurance co was refusing to pay after the fact), and we didn't want to wait as we were in crisis. We had to pay, gulp, $26k, and were potentially on the hook for $25k for other daughter. When she was released, the insurance co came through with approval. (But I am seeing for previous daughter they are only paying hospital $6k). Now I have to see if I can get our money back from the hospital. So, much more costly than IVIG, and I think similar difficulty in getting approval. It is a lifesaver, though. We very specifically reverted by about 2-3 years to a different developmental level. She would pop in and out a little, but overall, we had to manage her as a younger child for quite some time. This caused social issues as well, so we tried to keep play dates appropriate, and plan activities for the children, as it was a little odd for another child to manage - I expect this would be even odder as they get older - 7-8 year old are somewhat tolerant. What was REALLY strange to us, was that once she healed, while she is still a little "younger" that her peers, she caught up to her development in like a month. So as a mom, I was really disoriented about how to discipline, talk to her about issues, evaluate schoolwork and effort, play games, help with transitions and even feed. It was like one day she was 6 and the next day she was 8. Grooming was the most amazing - suddenly bathing alone, washing hair well, getting dressed, cleaning her room(!!!!) - she even organized her drawers all of the sudden, when before I might have asked her to put away spoons, and that was a challenge. I remember one day, saying to my husband - I think she is 8 again, I need to grow up as a mom, today!" Our answer was simply to treat her in all ways, as she was acting developmentally, without being insincere. My reasoning behind it was always just that she was dealing with so much stuff that another child would not have to deal with - both psychologically and medically - and that perhaps it was just too much for her to deal with. Going backwards a little seemed like a good coping skill. Even the baby talk! Some of this did turn into bad habits that we had to break down once it was all over, but mostly, we felt good about treating her like the age she was able to deal with. Link to comment Share on other sites More sharing options...
faith Posted March 16, 2010 Report Share Posted March 16, 2010 Can i ask is plasma ph, more readily covered by ins?or did you have to pay out of pocket and is it as costly as ivig? thanks to those responding!!! Fixit: $20-$30,000 Plasmapharesis $4-13,000 IVIG (depends on weight, how many days) IVIG for 55 pound son- $3500-5000 per day. Most of the additional cost-$5,000 is for hospital stay. Have it done at home, reduce overhead. Others can chime in here. michael, when/where are you doing IVIG? or is it done? Link to comment Share on other sites More sharing options...
simplygina Posted March 17, 2010 Report Share Posted March 17, 2010 My son, who just turned 10 went did the same thing with Pokemon. He grew out of it and gave all his cards away. Then during this last exacerbation he was totally into it again. i was worried he'd get teased at school, plus Pokemon has always been something I just couldn't get into at all. He'd go on and on about this one and that one and I'd be thinking-I DON'T CARE!!!! Since we started the Biaxin it is gone again and I have to say I am really glad!!! Link to comment Share on other sites More sharing options...
earnestfamily7 Posted March 17, 2010 Report Share Posted March 17, 2010 I understand your concern... I worry the same way about me DS (almost10).... when he in an exasperation or his symptoms flare he has a ing for stuffed animals- he carries them all over the house (not just one or 2.... approx 12 of them!) and he will ask for stuffed animals that I gave away (he thinks they are stored somewhere_ 3 years ago! 2 years ago he had an episode where he LOVED fisher price little people... he would take his brothers Little people and hide them in his room - set them on his dresser... you name it.... He is doing much better these days and have seem most of the regressive behavior diminish... It is interesting though... when they age regress in play I also see it in the 'whole child" emotionally/cognitively.... I hope she continues to get better Link to comment Share on other sites More sharing options...
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