Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

Everything posted by momto2pandas

  1. I have been reluctant to mention this since I was not sure it was widely applicable and I didn't want to scare anyone, but I did want to jump in here and say that in my family (for those of you who don't know me, we have several adults with PANDAS since childhood in addition to children with PANDAS), there is an association between heart conditions and PANDAS. I (and others in my family) have mitral valve prolapse diagnosed when I was about 30, and at age 40, my chest pain became bad enough that they did a stress test "just in case" it was something more and it came out abnormal... and then an angiogram, which showed a partial blockage. A number of adults in my family have needed bypasses in middle age. My level of blockage was not severe at all and not unexpected for an "average" American person my age, but it was very unexpected (except for the family history) given that I'm a lifetime jogger who's been pretty much a vegan for 30 years, reasonably lean, and premenopausal, and with low cholesterol, etc. It was attributed to inflammation. On 6-month follow-up, the stress test was back to normal, and I was told that it must have been part of an infectious episode (that was the same year we all had a lot of strep), but I still see a cardiologist 1-2x/year for a stress test to make sure that it stays normal, and I will get a repeat angiogram at some point to make sure that the blockage is not progressing. My cardiologist said that as it is, I could live to 95 with the condition without it making a jot of difference, but he warned me never to get overweight, eat poorly, stop exercising, etc. My CamKinase is 182. I should mention, too, that both Dr. Trifiletti and Dr. Bouboulis asked me about my heart before I even mentioned it, so I think they do realize that there may be a connection, long term.
  2. That's great news and interesting to me, because Aetna denied IVIG for me because my deficiency was "only" selective. Maybe we'll switch to UHC next time around... I've heard from the primary immune boards that they are one of the better ones for coverage for immune issues. I'm just afraid to make any kind of switch now that Aetna has approved such generous coverage for the boys... Best of luck!
  3. Nancy, so sorry for you and your daughter that you've had such a rough ride of it. The stories of teenagers always break my heart the most, because those are the ones that I identify with. I know that some say that PANDAS gets better at puberty, and it seems to for some of the boys I've known, but for me, puberty set off the worst and longest episode ever. I just wanted to say something about hospitalization, though - I was hospitalized several times for PANDAS (not recognized at first) as a teenager - a total of almost 2 years (some of the length was due to complications of anorexia nervosa) - and it doesn't have to be a bad thing. One of my hospitalizations, incidentally the one in Boston, was a nightmare. However, a couple of my other hospitalizations were terrific, safe healing experiences for mind and body and I made deep friendships with other people going through similar things, learned a lot of great coping skills, and emerged much better in many ways than I entered. I felt like I should add this because I don't want people to see hospitals just as "jails" that one ends up in when all else has failed. They can actually be places of great healing. It pays to choose well, though. The ones that wound up being bad were when I was just admitted to wherever my doctor had privileges. The good ones were places my family hand-picked because they were so good with mental health issues.
  4. No, I am only selectively immune deficient, but my sons are both broadly immune deficient. Low total IgG, low IgG Subclass 3, and failed response to Prevnar. My mother told me that I was sick constantly until about 1st grade (I was hospitalized with infections), and then got a lot better. We did not know at the time that I was immune deficient (assuming that I was). My ds4's numbers are significantly worse than ds6's, so I'm hoping that maybe they are on the same trajectory I was on and their immune deficiencies will get better/narrower over time. Of course the IVIG will help too, but I'm hoping that they may have underlying maturation of their immune systems even on their own.
  5. They had chronic sinus infections starting last October - and we knew it. Their sinuses were full of green stuff. Dr. B didn't discover anything with the kids that we hadn't already known; we saw him to get his direction on treatment dose, frequency, etc. Re. tics, ds6 had only eye tics. Kind of a stretch and roll thing. It was not a lot, just several times per day, maybe 1-2 times per hour. Rarely, it would be quite a bit worse. Ds4 hadn't had any tics at all until the week before we saw Dr. B, when he suddenly developed the same eye tic his brother had. (Incidentally, I had the exact same tic while I had anorexia nervosa as a teenager.) Ds4's tic never came back after the IVIG. In ds6, I have seen it maybe 4 times in the last 4 weeks. They also both had sort of a stammering speech thing, ds4 quite prominently. That's also at least 99% gone now. Re. OCD, ds6 had classic OCD symptoms during the episode that led to his diagnosis, but never really had those again. Perfectionistic streak, yes, moodiness, yes, but not really OCD. Ds4 had much more classic OCD stuff, insistence on stuff being done in a certain way, certain order, certain location, etc. It wasn't that much different from typical toddler stubborness and attachment to ritual. e.g. he wanted to buckle his own car seat, and if you did it instead, he would insist that you take him all the way back to the house and start again from getting ready to leave inside the house (which of course we didn't honor). If the bedtime routine was done out of the "proper" order, he would be inconsolable. Now that he's 4 I think we would have picked up that something was awry, but when it started at age 2 or 3, we didn't think that much of it until he went on antibiotics for his sinus infection and the behavior disappeared, and then returned when the antibiotics stopped - 10 times. He never had things like having to count things, germ phobia, or anything stereotyped like that.
  6. Dr. Greene diagnosed PANDAS and treated it at first with antibiotics just during sickness/symptoms and for dental prophyaxis, which was fine for the first 1.5 years (this was just for ds6). When the infections became chronic over the winter and periodic antibiotics no longer worked (and ds4 developed PANDAS too), Dr. G sent the kids to the immunologist at Beaver, who diagnosed them both with immune deficiencies. At that point, we wanted to make sure that we saw someone with expertise in both PANDAS and immune deficiency so that we didn't make mistakes in treatment moving forward - neither Dr. Greene nor Dr. Mabudian (the immunologist) felt that they had sufficient experience to guide the treatment in such a case (dose, etc.). Dr. B gave instructions for additional tests to order and Dr. Greene ordered them, then we saw Dr. B for a consultation and got our first IVIG there, and Dr. B gave instructions for the next 6 months for Dr. G to follow in ordering additional tx. We could have done phone consults with Dr. B, but since there were three of us who needed consults and insurance only covered it if we did it in-person, it was actually cheaper to travel - plus we were long overdue to visit friends in the area, so we were happy to make the trip.
  7. To answer some questions, dose was 1.5 g/kg for the first dose, but will be reduced to 0.75/kg for subsequent monthly doses (Dr. B's instructions). They are also on zith (250 for ds6, 200 for ds4). Yes, the changes are pronounced in just 4 weeks, but keep in mind that we were (and still are, but improved) dealing with chronic sinus infections in the context of immune deficiency. I don't know if the changes in energy, mood, color, sociability, etc. are due primarily to improvement in PANDAS, or to just not feeling so dragged down and rotten with infections. Some things seem clearly to be PANDAS improvements - virtual tic disappearance. handwriting improvement, loss of OCD symptoms and stammering, physical coordination, etc. Others may not be. I would love to know if kids with PANDAS and immune deficiencies respond differently than kids with just PANDAS. Phasmid - the doctor I was referring to in SoCal is Dr. Greene at Beaver in Redlands. We will be getting IVIG at Beaver from now on too.
  8. I haven't posted an update in a couple of weeks, but wanted to add my 2 cents in here. A month ago my children were what we considered to be mild PANDAS - one of them so mild that we weren't even sure about the diagnosis. Neither met any DSM criteria for any kind of diagnosis. We were not at the point where we would have pursued IVIG for PANDAS alone. However, we found out that they were immune deficient - pretty badly so, and that they had chronic strep not eradicated by a dozen courses of antibiotics, and so we basically had no choice but to go with IVIG. We did IVIG with Dr. B 4 weeks ago. Wow, what a difference. The first 2 weeks were rocky - we saw things that worried us, as well as things that were positive. However, the difference is life altering. By a month ago, I had come to dread picking the kids up from school in the afternoon - not because of disabling OCD or tics or anything, but because of the mood crapshoot - would they drag and whine and and fuss all afternoon and make me exasperated and exhausted, or would they be ok? As soon as they woke up each day I would look at their eyes (circles, pupils, etc) with trepidation, to get a read on how our day would be. If I saw bad news, I'd sink. Every time I accepted an invitation for a playdate I would have to wonder if they would be in an acceptable place when the day actually came, or if they might get unlucky and wind up alienating their friends with a crappy mood. I doubted my parenting. But since the IVIG, they come home from school each day with great big smiles. They make it through each day with good energy. They cooperate (age-expected). Whining is virtually absent. Tics are completely absent. The still have their moments (what 4 and 6 year olds don't?), but everyone comments on how different they are - the light in their eyes, their energy levels, their eye contact, their color, their social engagement, their speech - and they were "fine" with respect to these things in the first place. Even their physical coordination is better. I had always thought my kids just weren't particularly physically coordinated - just a touch below average, no big deal. Now, ds6 is suddenly making baskets in a regulation hoop, riding a bike without training wheels, taking first place in several events (including hurdles) at track, etc. It turns out that he's very athletic! My 4 year old WANTS to write, which he was always too frustrated to do before. He colors much more within the lines, which he never even tried to do before. He socializes with a broad group of kids at school instead of just his best friends. Thinking about all of the differences - the things we thought were "just them" and that we were fine with, not realizing that their "real selves" were compromised - makes me want to cry. And still, I think we have even better to look forward to. At ds4's 4-year check-up earlier this week, his ped said that his sinuses, albeit improved, are still swollen, and that we can expect further improvement with time. If his sinuses are still inflamed, I'm guessing that his brain might still be as well. (He doesn't have any allergies, so inflammation=infection for him.) Both kids are going for another monthly IVIG next week, and will continue for a few more months. To make matters even better, their IVIG treatments are being covered by the insurance except for a $40 co-pay! And the insurance has agreed to pay for up to 11 treatments for ds6 and 12 for ds4! We had expected AT LEAST to pay for 20% after the $1000 deductible. Even better, they will get the rest of their treatment moving forward right here in our area in Southern CA. Their pediatrician, who is also an infectious disease specialist (and who diagnosed PANDAS in the first place), was very excited about the improvements, congratulated me on having pursued the situation aggressively, and has agreed to order all of their treatment and monitor their conditions locally from now on in accordance with Dr. B's guidance. I don't expect that this will be the end of PANDAS for us, but at least I feel that we are on the right track and that we know what to do moving forward.
  9. We are 1.5 weeks out, and although there are many improvements, ds6 now definitely has a daily tendency to react explosively and disrespectively to any little thing - at least as bad as during an bad exacerbation, and worse than before IVIG while we were on antibiotics alone. Similarly, ds4 now seems to be on a very predictable circadian rhythm where he has bad OCD - again at least as bad as during a previous bad exacerbation - from about 3-4:30 pm each day (when he seems extremely tired - and resting in bed seems to help), but not at other times. This pattern has been stable in both of them for several days. Overall, I would say that they are better off than they were during bad exacerbations before we had any treatment, but definitely worse off (from a parenting frustration point of view) than they were right before we had IVIG when we were on antibiotics only. We're wondering how long we have to wait before we can assess whether the treatment made them better or worse.... Dr. B thought that ds4 in particular would need several treatments to settle down, but again, we're not sure if what we're seeing now is just transitional or whether we're seeing a new and different baseline, with some great improvements but other worsenings. In terms of improvements, we're seeing improved cognition, pretty much disappeared anxiety, disappeared tics, better energy and physical coordination, better overall mood, better speech. But these explosions of PANDAS activity really are problematic. We used to see this kind of behavior only occasionally and mildly, and now it's daily and pretty bad - even though it occupies only a small fraction of the day.
  10. This probably isn't helpful, but Aetna covered it for both of my boys. We submitted it as immune deficiency since they both have pretty bad ones, and didn't even mention PANDAS. It took 1 week for them to pre-certify us. To my surprise, they pre-certified for 11 treatments for each of them over the next year. We hope not to have to do that much, but it's good to know that it's there. Aetna denied IVIG for me, even though I also have immune deficiency, because they felt that mine was not severe enough. We are still going through the appeal process. A friend of mine who works for BC/BS said that Aetna is famous for not paying for anything so I'm not sure what to expect.
  11. The first dose was 1.5, but he said that after the first we would switch to low dose for a while.
  12. Yes, definitely turning back of the pages. Every symptom we have ever seen in mini form. Leg problems that used to last days (quite a while ago), came back but only for 2 hours - one time. Used to get bedwetting during exacerbations, now he's gotten up to pee at night once or twice. Etc. etc. It's like he's great 99% of the time and the other 1% he does all of this old stuff and the weird rages in "flash" form. Dr. B said that he thought ds3 would need treatments every month for quite a while since his immune system is so shot... but then he backtracked and said "let's just see if he gets sick again before planning one next month." We'll see if what he's experiencing today is a new or recurrent infection, in which case we'll probably schedule one for 4 weeks from the first, or if it's "turning back the pages". At least my little guy doesn't really mind medical procedures. He wants to be a doctor and is very interested in watching the needle go in, etc. He winces, but only as much as I would. My six-year-old freaks.
  13. My kids are doing pretty well. We are 7-days post IVIG now. Ds6 is great 99% of the time. He has these bizarre 30-second explosive rages several times per day, that vanish as suddenly as they start. Something sets him off and bang, and then it's over. He even pushed me once, which he has never done before. That's it, though. No tics, no anxiety, great energy, and he looks good & happy. I don't feel like we're on a smooth path yet but am hopeful. Ds4-this-week is doing very well in some ways, and not as well in others. His stammering/stuttering is 99.9% gone. That part is quite amazing. Overall, his energy level is better. However, he is moody. He looked exhausted this morning, then was apparently good at preschool, then had a bunch of OCD and defiance stuff and emotional sensitivity this afternoon. Then mid-afternoon he suddenly said that his head really hurt, he gobbled down 24 oz of milk, and he said that he wanted to go to bed (and he hasn't napped in years). He has been asleep since. His last day of steroids was the day before yesterday, so I am wondering if he's having an adjustment to going off. I'm just praying that it's an adjustment one way or another and not some new infection. It's interesting - Dr. B said that he thought that ds6 would do well after a single treatment and that ds3 would need a bunch, based on their test results. We're only a week out at this point, but it does seem like he might be right.
  14. This is so odd. It reminds me that when I was a kid in an exacerbation, I had to have all of the lights on too. I had forgotten all about that. Mine turns them all off! We have the lights on thing too... lights on all night in his room when he is really bad.. but melatonin has helped that.
  15. Does your 2 year old have an immune deficiency? IVIG is routinely done for immune deficiency in very young kids. The immune system develops a lot between age 2 and 4 on its own, so maybe Dr. K is waiting to see how that works out if there isn't an active immune deficiency. Does he show signs of chronic infections? When I took my 3 (nearly 4) year old to Dr. B, he basically told us that we had no choice but to do IVIG, probably frequently, because of the condition of his immune system and his chronic infections, even though his PANDAS is very, very mild. Given this, he didn't seem to feel that there was any need (or that it was even a good idea) to keep him out of preschool. In fact, he told us that we should take him right back to school immediately after the procedure to try to interrupt his life as little as possible, which we did....albeit with a lot of hand sanitizer!
  16. We had an interesting situation with our IVIG earlier this week. Ds3's stammering/stuttering COMPLETELY stopped during the first day of the treatment, and stayed completely stopped the second day. He spoke 100% completely clearly all the time. Now, a few days later, we are seeing what seems like more of a PANDAS exacerbation and at moments, his speech is so bad that I have absolutely no clue what he is trying to say. Literally jibberish. I'm assuming for now that this is the adjustment most people talk about post-IVIG, but I given the 100% disappearance of it in the first couple of days, I'm hopeful that we'll see improvement over the next few weeks.
  17. So glad it was a great day! Happy Birthday Danny!
  18. My 6 yo, 4 yo and I are all on Day 6 of a 15 day burst. They were definitely worse the first few days, then extremely tired at end end of the day yesterday, and today, they are fantastic. Zero tics, zero rage, zero whining, all smiles. Maybe still a bit (or more) hyper, but they are enjoying the playground while I sit. I just hope that I'm next in line for the great mood and energy. I am wiped out, still.
  19. Yes, they are quite immune deficient. But Dr. B prescribed steroids knowing that, and also knowing that they are getting IVIG in the next couple of days, so I assumed he knew what he was doing. He said that we needed to get the inflammation in their sinuses down so that they could drain (which was not happening at all, still not happening enough), else the bacteria would just stew in there. They now seem to be getting better rather than worse from the bottom a couple of days ago, but I still think they were better off before the pred behavior-wise and in how healthy they looked. I do notice that their pupils seem to be smaller, interestingly.
  20. Joint hypermobility and mitral valve prolapse are quite common in anxiety disorders, particularly when they are associated with other autoimmune disorders. I actually have both. I think its fairly common. I found out when I found out about the PANDAS that I had it. I don't know if DD2 had is it yet. I hope not. I have type 3 I believe which isn't going to affect me later in life but it is odd. I also have mitro vaulve prolapse because of the Ehlors Danlos
  21. I'm afraid we might be seeing the opposite. The boys were doing very well until we started the steroids; now they look bad and act worse. Today was day 3 of a 2-week course. The were actually better today than the lousy couple of days before, but not as good as they were before we started them. Anyone know if this is cause for concern? I am hoping that it's just an adjustment....I feel pretty crappy on them this time as well.
  22. Also, on the topic of boogers, ds3 started picking his nose yesterday. I take that as a sign that the inflammation has lowered enough to allow stuff to actually start draining down into his nostrils. Had to laugh because I am so pleased to see my kid picking his nose. His voice sounds much less congested today.
  23. Thanks for this, Kim. That's a great article. Interestingly, I did start getting hives last week (went away with a lot of benadryl) and a rash on my shins just a couple of days ago. I assumed that was from the steroids but maybe not. Dr. B didn't really elaborate, but the IVIG for one thing seems like it may be the only way I can get rid of this strep (with no antibodies of my own), which I think would cut down on the immune complexes, and it suppresses autoimmunity. I don't know if it actually clears the complexes, though - that's a really good point. Does seem like PEX then IVIG would make sense. Can't believe I'm talking about myself in these terms...
  24. I just wish Aetna agreed with you! They denied to cover it for me, despite the fact that I meet their detailed written criteria for coverage with no exceptions, and have it all documented. I am hoping that Dr. B will change their minds, but if not, we plan to hire a lawyer. What good is insurance if they can back off like this on the written stipulations of their coverage contract as soon as you need something? I am mostly afraid that if I don't get treated and am never able to get over this chronic strep infection, then the kids will be continually exposed to it with little hope of that situation ever ending. I have little hope for the boutique antibiotics I'm taking now that I've been through months of all of the usual suspects with no luck. We could pay for IVIG for me if need be (not indefinitely but at least for now) but I really don't want Aetna to get away with that. I don't suspect any kind of PANDAS-related things for my little guy's failure to grow. He's not weird about food behaviorally, at all. He's just eaten very little since his nose got totally blocked. I don't think he can smell anything with his nose so stuffy, and infections at the level that he has really kill the appetite.
  25. i wish you well and luck...i don't know how you will handle that coaster on your own, but you will, you are very knowledgeable and that will help you. i hope it goes easier than imaginable on the little guy...maybe he'll just handle it better than can be expected...my ds is the best patient any doc has seen!!!! how did you contract malaria? and do yo know when? and what do mean by chronic? i've mentioned before my dh grandfather had malaria in the war and had a psychotic episode and i think things trickled down from there I got malaria in 1989 while living in Madagascar. Like the 21-year-old immortal that I thought I was, I decided that I didn't really need to keep on taking malaria medicine now that I was almost "a local". In less than 2 weeks, I had malaria. After the first episode, which was about 3 weeks long, I had "recrudesences" that lasted a couple to a few days every several weeks for several years, even after I came back to the States. I don't know if I would say that they were associated with psych symptoms, though. The fevers got really high (circa 105) and I always got really delerious and disoriented/confused , but I think that might just have been the high temp rather than anything autoimmune. Who knows.
  • Create New...