PEX almost 3 weeks in & Symptoms still escalating...

[DsMom]

Ive been cruising the posts, most are years older, re/PEX recovery. But what I keep seeing (selective reading perhaps?!) are comments about immediate and/or major improvements seen with in days for PANDAS kids. I didn't go into it with set expectations but I sure didn't think it was going to throw DS13 under the bus!

 

DS13 is 19 days post treatment (3 consequtive days at GTU) and he feels worse than ever! He hasn't been jerking and ticing like this for months, even when he's sleeping he's jerking now. He started feeling awful about an hour after day1's treatment....I almost couldn't get him back on board to keep going it was so bad for him. The only thing that hasn't escalated is the super nutty schizophrenic behavior he had when he was raging with Strep. The depression, tics and itching sensation are all sky high now, and obviously he was already in bad shape or we wouldn't have hauled him to GTU (from WA) in the first place!

 

Has anyone else experienced this, a MAJOR backward slide before going forward? His last two steroid bursts were brutal on him, but he eventually returned to 'pre-steroid' levels after stopping them. I never would have given him steroids if i would have understood the potential to exacerbate tics in PANDAS kids was so high. I feel like everytime I sign him up for a 'helpful' therapy I end up kicking him in the head instead. At the very least I want him back to his regular awful, right?

 

I am trying to convince myself that SOMETHINGS happening or he wouldn't feel worse...IVIg didnt do anything (that we can associate with it. Maybe they helped a bit over the long run but its hard to know). And maybe PEX won't do anything for him (please let that NOT be true) and he will go to next therapy (Rituximab) but he's been through so much, it's his turn to have some positive results.

 

I'm trying to get my arms around some type of expectations. He's older, a tic/Anxiety presenter and fully hit puberty at same time as major exacerbation 12/2011 so he's a tough case, I get that. I so want to get him some relief, even just some decrease in the itching sensation would be a huge impact.

 

Thanks for letting me vent and for offering your understanding of how this works, it's very appreciated.

ET

[cobbiemommy]

I have no words of wisdom for you other than a virtual hug. I am a firm believer that even negative symptoms give clues to your doctors on how to treat your child. Something is being stirred up in your child's body; I hope you get some healing and answers soon.

[JoyBop]

I truly hope that things turn around very soon for your son. You have both been through so much and deserve healing and soon! Sorry I don't have any words if wisdom either but wishing you the best!

[LNN]

You and I have brainstormed before and I wasn't able to offer any ideas then, and probably can't now. I know you have a good handle on your son and you're persistent enough to have looked into lots of angles already. But I'll toss this out FWIW - you used an immunopressive therapy - HD IVIG - and saw no gains. You used a more dramatic treatment that should be very effective against an autoimmune disease and have seen huge regression, perhaps a consequence of removing not just auto-antibodies but also normal antibodies that were fighting some chronic invader? You mention next moving to something that destroys B Cells. But every time you've used a treatment that is meant to hobble an immune response, your son hasn't improved.

 

Maybe this isn't about squashing the immune response but instead, maybe there's an unidentified thing that's keeping the immune system in overdrive - not in some "misbehaving" or "misguided" way (as in autoimmune) bit rather in some "I know what I'm doing, I'm trying to fight this invader" sort of way.

 

My son initially improved from Pex but perhaps it was because he was 6 weeks post-T&A after a year of a chronic infection in his tonsils or adenoids. He was already showing signs of calming down pre-Pex. But 6 weeks post-Pex, he ramped up again and I couldn't figure out why. I blamed a BFF who had back to back strep infections, I blamed viral infections, I was so certain his was a strep-only situation. So we went to IVIG and that made him even worse. It was only then, when his body continued to not "follow the script" of an auto-immune condition, that I started to consider lyme. It was only after my own paradigm shift that we started pursuing treatments that got to the crux of his problems.

 

I'm not suggesting your son has lyme. But I am asking- what if your son's issues aren't autoimmune? What options then open up to you? As Cobbiemommy says, the body's response, both positive or negative, is informative and can guide future treatments. A serious regression after removing the body's antibodies would make me really question the use of something that kills B cells.

 

I wish I had something more constructive to offer. A "try this" sort of post, instead of a "don't do that" opinion and Monday Morning quaterbacking. But the only suggestion I have in that vein is to maybe consider contacting Theo Theohrides at Tufts http://sackler.tufts.edu/Faculty-and-Research/Faculty-Profiles/Theoharis-Theoharides-Profile He's a mast cell guru.

 

I hope your son catches a break soon! He sure deserves it.

[Hrosenkrantz]

I had a similar thought as llm. I'm sure pursuing other infections is the last thing you want to do right now. But i had one doctor say to me after my son seemed to get worse after an ivig that it could be because we didn't eradicate an underlying infection...

[PowPow]

my daughter had improvment at about 3-4 weeks post pex in 2011 (each time- she had it twice). it was def noticeable, but she went from being room bound to being able to go out a little and shower once a weeks- versus not at all in 4 + months. So the changes were great, but no miracle.

She returned to severe baseline after a few months.

 

did he have pos repsonse to steroids or some other confirmation it is autoimmune? I assume, since you mentioned ritux was the next stop. Does he have any markers for autoimmunity? sed rate, ACE, antibodies

 

I just read that he returned to pre-steroid level after the burst was over.

 

My daughter (15) is now doing wonderfully after 6 months of high dose (1g) solumedrol and 1g/kg IVIG monthly and 6 months cellcept. starting in Feb, her infusions will be spaced to every 6 weeks.

 

I do not see how pex itself could make anything worse. Medically, I think that is not really likely.

 

Have you tried high-dose twice daily Augmentin?

[T_Anna]

DSMom, our story is similar, except we are a few months out and things are looking up.

 

DS15. Probably sick with PANDAS since age 2. Diagnosed November 2012. We tried a steroid burst in December, did nothing. Tried a taper in February and no noticeable changes. HD IVIG #1 in February (only noticeable change: eyes no longer dilated), HD IVIG #2 in March (only noticeable change: rages fewer and less intense). DS still stuck on couch, not bathing, changing clothing, etc. we decided to take a break from IVIG and do Molecurela. Results arrive in June, PANDAS highly likely, CamKinsae over 200.

 

PEX done 7/30/13-8/3/13

On the way home from hospital he wishes he was dead. DS just as non functional as before. Lays on the couch all day (used to get up and move around the house), eats only a few things on certain days and goes to the bathroom Sunday night to Monday night (then gets to 48hrs, 72hrs).

 

A few weeks after PEX we do HD IVIG #3, no real results. In the meantime we have discovered elevated SED rate, ACE levels and Hashimoto's Encephalopathy. October 23, HD IVIG #4, still not much improvement. But able to convince him to change his clothing, and he's having trouble keeping to his Sunday night bathroom schedule as he has to go more often. Still keeping to OCD eating schedule and laying in the couch. December 13, HD IVIG #5. Goes into the bathroom and stays there almost 80hours, but is able to get out when we threaten that we will take him to the hospital. A week later is able to get out if bathroom with our putting pressure on him after 5 hours. He is moving around the house more, eating everything all day (cooking himself food). He helped me clean up the hoarding and organize his and his brother's room which he hasn't gone into in months. He still has miles to go, but we finally see progress in feet and not inches. What could be helping? He's on 80mg steroid burst, Augmentin XR, Valtrex, minocycline, FLAGYL, nystatin.

 

We also never saw any improvement from standard immune modulation, but maybe the PEX cleared the way for the HD IVIG to work??

 

He is still very very homebound, now sleeping in my bed (ughhh), etc.

 

Our real dilemma is whether to go down to DUKE in 3 weeks or do IV steroid here first.

 

So the moral of our story is that something IS working now. My biggest fights with DS the past few days is that "you want everything to be fixed, right away!" (In DS's words), he's right. I'm more impatient now that there is progress than I was when he was in such bad shape that all I could do was watch him and pray, not sure why that is : /

 

We know we've come a long way, since he now uses the sharp knives we used to hide in our bedroom.

 

T.Anna

Edited December 30, 2013 by t_anna

[DsMom]

Joybop and Cobbiemommy: sending you both big, huge hugs. It feels so nice to have the support.

 

LLM; I will never be able to repay you for the time and interest you have spent with me. I am always in awe of your knowledge and willingness to share it with all of us, and we love you for it! I just hope somehow I can one day be as supportive to another parent in this awful situation.

 

Hrosenkrantz and Powpow, (LLM already knows this part) we have tried, for 2 years now, to run down any other type of infection that might be fueling his symptoms. The only thing he's ever been positive for is Strep, and he's gone 16 months now strep-free. When the sky fell; Strep A positive. He was almost continuesly positive for 6 months as was DH...finally thought we had kicked it out of both of them (and of course neither of them had any symptoms, ever ) did T&A, then first IVIg...but was still strep positve. He actually had the best response to the IVIg when he was strep pos, go figure. No ticing and more relaxed than I could remember for 3 whole days. Then all heck broke loose. 2 more HD IVIg's once he swabbed clear 3 weeks in a row with a month in between; no changes of note, all though as time went by (and he was doing Klinghardts Lyme stuff) he got more and more mentally together but became more depresses as he became more 'present'. Maybe the IVIg was working on that part, hard to say.

 

We have gone down virtually every path we can think of with no infections found. We have tested for Lyme (always neg, but w/ IgenX there is strong speculation he could be have it, plus he had a bite that resulted in a red ringed rash 2 months before he got hit w/ PANS), parasites, vitamin deficencies, GI, Hormonal, Mitachondrial, checked always for Strep and Myco, mold, biotoxins, food allergies, metals, Rheum at SCH found anti phospholipid syndrome at onset, and Mayo found POTS this summer but I'm telling you the only thing we haven't done, that I just got orders for today, is AE. So he's off for more blood tests tomorrow. I will say that we haven't hit Lyme as hard as we could have (Klinghardts regime for almost 6 months before I pulled the plug - they made me so mad they were so hard to work with but I think they had thier hearts in the right place), so we may be revisiting that aspect in the near future as our current LLND felt we should give PEX a shot, see what happens and if it wasn't successfull 'hit Lyme hard'.

Dr. T had him on Minocycline for 6 months and that's a Lyme Abx before Dr. L shifted him to Augmentin HR (but only 1000 mg 1x day) , so hopefully if Lyme is at play that had been helping, but I know it's not enough. LLND hasn't been convinced it's been a concern of his, his mold and biotoxin numbers were much more concerning and we have detoxed him and gotten them down into reality - with not much impact we can see.

I began the toe-dip into Methylation (again a BIG thank you LLM) and with a few months of very small supplement additions we saw, and even DS agrees, he was just a bit 'less bad' the month right before PEX. He wasn't great, but he was mentally together, very depressed, but in complete control, lighter in overall mood, etc.

 

Powpow I can't say he had a positive reaction to the steroids, the first 2 were unremarable and the 3rd and 4th were awful, major uptics in all symptoms; physical and psychological. But he's a tic presenter and steroids can totally exacerbate them so that's also a hard call re/ thier lack of success. I honestly don't know if he's gotten any positive markers on his SED rate, antibodies or ACE. I should know shouldn't I...? Sigh.

 

His Cunningham results make every doctors eyes bulge who sees it, they litterally do a double-take. His Dopa D1 is 16,000 (mean 1056) and his Dopa D2 is 16,000 (6000). His Lysogang is normal at 160 (mean 147) and Tubulin is 500 (250-1000) and CaM K II is 111 (53-130 mean)....are his results enough to indicate autoimmune disorder then?

 

I just found an old post where a boys tics amped up super high after PEX and about 4 weeks in things started to change, the mom rated the before a 3 and the after an 8. I am going to reread it constantly to keep my mind positive! I'm just going to hold my breath, get his blood taken tomorrow to rule out AE, contact Theo Theohrides, ask his Neuro about the sed, ACE and antibodies that would indicate autoimmune, and HOPE that he begins to turn the corner soon.

 

 

Our local neuro, Dr. T, Dr. L and her co-hort Dr. H all concur that he's got 'it' - if I could tell you how much time I have spent trying to figure out what the heck is keeping him amped up, you don't want to know (of course you all are doing the same thing).

 

T_Anna I'm going to PM you. I am so happy you are having a measure of positive movement. Baby steps, baby steps.

 

You are all the most wonderful, caring group and I thank you from the bottom of my heart.

Erin